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Monday, July 15, 2002 at 10:25 PM (CDT)

ALL NEW PICTURES

We,ve been in Buffalo NY for the last month we got here on June 17th and were still here were going back home on the 22nd. So Mikie hasn't been to the Dr. in over a month. Its a bit nerve racking but I know he's fine excpecially when I'm asked which one of the kids is the sick one? By a family member or friend. We've had a pretty exciting summer so far. We've spent a lot of time in Canada. My mom lives in Grand Island, Ny thats about 10mi from Niagara Falls.So here's the itinerary so far we've been to African Lion Safari in Canada it's a really cool place. we had about 10 monkeys on the truck we were feeding them marshmellows they loved them, they didn't like the chicken though anyway we rolled down the window a drop and held a marshmellow there and they would stick there little hands in and take them from us. Unfortunatly the outside of the truck was a bit sticky. But luckily after passing through the moose area we had a bit of a car wash moose have rather large tongue's and proceeded to lick the entire side of the car windows and all . Giraffe's are friendly and have very long tongue's we rolled the window down to feed them on the drivers side and they stuck there tongue in sideways it was so long it nearly reached the passenger side.next we were off to Clifton Hills it is a tourist spot for tourists visiting the falls It's a long strip or souvenier shops, wax museums, fun houses, haunted houses and IMAX theaters. Next was seabreeze amusement park in Rochester Ny. We spent from 11 am until 10 pm at the water park,rides and playing games and on the way home we ate at IHOPS the kids love it there . Next was Fantasy Island and it was the 4TH of July, this is an Amusement park on the island the kids rode the rides until dark and then we watched the fire works in the parking lot. Next was Marineland another truly amazing place and luck would have it that we had the very best seats at the show and the kids were in the little production they put on with The Black Knight it was cool. They rode rides , Fed some really large Fish. Were herding Deer in the Deer Park. Were feeding some really attentive and freindly bears and had a lot of fun.next we had a picnic at Niagara Falls Park. All the cousins and Uncle Mike played something that they were trying to call football .It dosen't work out well when you have 6 children 2 to 7 years old lots of fights and crying. But it was really funny for us moms watching the crazy thing these little people were doing, we then walked to the Falls, following the rapids to the end where the water dropped it was really beautiful. After that we hung out in the park and the kids ran through the water sprinklers. next off to Darien lake where we spent the day at the water park and on the rides. Also we seen Lilo & Stitch and Men in Black 2. Been to dairy Queen or some ice cream place nearly everyday and McDonalds playland the last two was all Grandma she loves ice cream and is a manager at McDonald. One more the Italian Festival which insn't very Italian anymore these day ohh well the kids at fun on the rides. Uncle Mike decided to make it Christmas in June when he took all the kids to Toys R Us and let them buy whatever they wanted, 3 huge bags full of toys they filled the entire living room don't know how were getting them all back home and last but not least it was real fun just visiting old frinds having our children who don't know eachother play[their all babies still] going to birthday parties and sleepovers I don't think were done yet but I'll tell the rest later. Camp Sunrise[ the only camp for little kids with cancerin Nc] Is cancelled this year and probably for good. The kids went last year and loved it. This is very sad I realize that most are not able to enjoy the summer like we have and for the poor kids to have camp taken away from them is horrendous. As soon as I get home I'm going to start working real hard to make sure the kids with cancer in Nc are the happiest on the planet.

Thursday, June 06, 2002 at 05:28 AM (CDT)

Mikie is doing well. finally after a year his counts are steadily where they should be. His HGB [hemoglobin- gives you your energy] has been 8.6 for a month now. Thats pretty low they trasfuse at 8.0. But he seems fine to me he's very active,but if I think about it he's not as active as the other kids. Him and his brother got new bunkbeds yesterday. He was very excited, it's a really cool bunkbed. one side has a desk attached to it ad the other side has a dresser in the front and shelves on the side. Baseball season is over the team had a picnic. All the kids had fun. MIKIE GOT HIS FIRST TROPHY. He was so excited. We went to grandma and papa house to show them he brought it to the DR. to show everyone there. He was stung i the foot by a bee Teusday. The stinger didn't stick in though so it wasn't that bad, he was in pain and crying for about 15 min. So you would think he'd be scared of bee's now? Nope, yesterday he came in the house to show me the bee he caught, He had it in one of those little plastic bug container's. I wasn't to thrilled and told him not to do that your going to get stung again blah blah. He didn't seem effected by it. Memorial weekend he kept waking up with an earache I gave him motrin. He ever had or got a fever. The motrin might have headed it off. But the pain kept coming back, so I called the onc and he called a prescription in. Eardrops that numb the ear he said don't give him any motrin,tylenol or aything because he wanted to see if a fever would develop. It never did and went away. Now he woke up tonight crying again about his ear . I put the drops in but he still kept cryig I guess they did't work. So I gave him the motrin, probably shouldn't have but I did't wat him to be in pain. The cancer clinic had a picnic last Saturday It was really nice, pony rides, petting farm,food,games prizes. I was so impressed with my baby he was so independant. He would go up to stands and ask for stuff by himself, like popcorn, cotton candy and 4 snow cone's lol. The only down fall was the weather its been so hot and humid upper 90"s for a week now. Were getting ready to leave for Buffalo for a month on the 17th . We'll be coming back aroud the 20th of July so Mikie and Samie could go to Camp Sunrise. It's a day camp for children with cancer and thier siblings. Mikie and Samie loved it there last year. The my baby starts Kidergarden August 19th. He's excited.

Sunday, May 05, 2002 at 06:22 AM (CDT)

Yes, it is actually a new entry, Mikie is doing great, he's a little down this week because he's got IT Methetrexate, Vincristine and he's on a week of steroids. He looks pale with the racoon eye's and thats just sooo scary for me to see.[It reminds me of what he looked like at diagnosis] He never looks like that it's been 5 months since he's had Vinc & Dex and a year since there was IT Methetrexate given at the same. So I walk around all day and say the samething 3 times a day " I don't understand why he is so pale he shouldn't be, Vincristine dosen't affect counts and Dexamethesone[steroids] raises them. If I rationalize it I know I'm just freaking out because he's so pale. ANYWAY he is so funny, he is a very ,very quiet child that does not really talk to anyone but his immediate family. Well steroids could cause hyperactivity it seems to have settled in his mouth lol ,but were loving it he's constantly following someone around the house and he's just talking and talking real fast to. It's cute. Yesterday when I woke up he was on the phone with my mother and he just talked and talked and talked for like a half an hour. Never in his life has he done that. He has always totally refused to talk on the phone. Well he does seem to be growing up , definately making that transition from baby to child, He knows how to spell his name well kinda he spells it mkiie Hey all the right letters are there. He,ll be starting kindergarden this fall. [I'll skip all the anxieties I have over this] He's on a t-ball team and I've noticed that he gets along very well with his peers, eventhough he's at least 6-9 inches shorter than the smallest kid on the team, he's not shy at all. As a matter of fact 2 weeks ago he anounced to the kids "I have cancer and get shots i the back" They paid no attention to him they had no clue what he was talking about, there all 6 & 7 years old. He's also has started talking about heaven and hell, leukemia and Sophie[ she's his 3 year old friend that died of a brain tumor in Dec.] I think it's because he's just growing up but he asked me the other day "If I go to heaven can I come back and get a drink?' So that was the first of all the talks about this stuff. We did have a long talk and he actually said Leukemia it amazed me for some reason, probably because, even though Leukemia has consumed our life for the last year and a half he has never said the word, or ever talked about it. Well any way our cat ran away we got a hamster the other day and had a little crab for about 12 hours we put him in the fish bowl and then he was dead in the morning. There's wood chips all over the house from that hamster cage. But that don't matter Mikie loves him so much the first day we had it Mikie went to bed [ or should I say went to couch] past 12 am. Well he popped up at 5 am and went directly to the hamster cage , eye's barely even opened. I picked him up put him back on the couch and told him the hamster is fine, and will be here in the morning you need to get some more rest he was so tired I got no argument from him. Well in the last 3 months that I have not written I have become very educated in the leukemia deptment. I'll do my best to explain but this some pretty complicated stuff. When a child is diagosed with leukemia some of his bone marrow is sent off to a lab for DNA testing on the leukemia cells, Mikies leukemia cells had a [12,22] translocation and a TEL-AML1 fusion. This is asociated with a favorable prognosis. There are other markers, translocations and fusions that the leukemia cells could have, This DNA testing pretty much accuratly can predict how the leukemia will play out and if a cure will be obtained. So I guess were very lucky. Except there is no proof yet on this subject, no statistic's. All this testing and predicting and individualized treatment is new, too new to have any results back yet. I know I should not be complaining, I've been there at the clinic and support group meetings with parents that have dying children, relapsed children, children with less than a 20% or less chance of survival. I've been to 2 funerals in 3 months. All this does not make me feel too much better about Mikie I read an article the other day that was about a study done at St.Judes that said out of 79 children that were TEL-AML1 positive 7 relapsed 7-10 years off treatment all these wonderful quotes that I get about my son are for the first 1-5 years off treatment after that your considered cured , well I guess you were not if you were one of those 7 children HUH. I don't care what his progosis is, this just sucks and I'm really not finding much comfort in any of the great stuff I hear about. I was also reading protocals it was either St,Judes or Dana Farber Institute and it said that while they were sure that low risk protocals were suffcient treatment for the trisomy [4,10] kids they still were not sure if it was enough for the TEL-AML1 kids they were still trying to figure that out. Yeah right I'm feeling real good about that. I also really believe Mike's prognosis of 92% chance of a cure that Dr Mary tells me. I guess she just happeed to forget about the rest of the stuff

Saturday, January 05, 2002 at 05:49 PM (CST)

We had a nice Christmas, went to grandma's Christmas eve and Uncle Steve's Christmas day. Mikie got tons and tons of toys all that he asked for but I don't believe he is particularily impressed by any of them. New Years eve was interesting. We had a sleep over 9 children altogether I made them tons of food and a special drink. you dip the rim of the glass i pop rocks then fill it with jello,sherbert, baking soda, sparkling cider and ginger ale mmmmmmmmmm why of course they seen the ball drop lol. Mikie is very sick today. He has a stomach flu throwing up and diahrea I'd call it severe my poor baby. He looks awful real pale, racoon eye's and he's shivering. I hope it just the 24 hr bug or we'll be at the hospital vacationing soon. Luckily he has no fever

Thursday, December 20, 2001 at 06:27 PM (CST)

Ok I did't want to let a month go by without updating. Well I am lucky enough to be able to say there's not much to update. He's doing great. Besides for an occasional cough that totally freaks me out and turns out to be nothing. He's fairly excited about Santa coming and isn't asking for much he just wants a robot. a wooden guitar and some toy story stuff. He sits on Santa's lap but will not talk to him.

Tuesday, November 20, 2001 at 08:14 PM (CST)

We had a celebration on Sunday just for the hell of it! We had everyone over for dinner and dessert. We had a " Can't Mess With Our Family Party" ? We were thrown a curve and caught it and threw it back. We have survived a year of cancer and were all still in one piece and the family is intact. Mikie went to the clinic on Monday and Dr.Mary raised his dosage of Methetrexate because his ANC has been consistantly over 2000. She says he looks great and we don't have to go back until Dec.4th

Sunday, November 18, 2001 at 06:55 PM (CST)

A year ago tommarow is Leukemia's 1st anniversary . A year ago today was the start of the 1st signs and symptoms, and daddy and I knew in our hearts something was wrong with our baby. It seems like a lifetime ago. In a way it was, because I see life through new eyes. 1st of all you must know if I could of had the Leukemia for you, I would take it with a smile. But Leukemia has done so much for us. I've always loved you enormously. But after all we've been through, all the precious time we've spent together, I will never forget and I could never regret them. You are the love of my life and hands down will always be. I love you so much the songs I hear are about you, I want to write poem's dedicated to you. I want to feel your hand on my shoulder, so my whole body will feel warm inside. My memories of this past year start off being very painful. I never thought we could of made it, you or me. I also remember that when we were first home from the hospital you slept on me at night, I was your bed. You'd tell me ok mom I'm tired now and I want to go to sleep, lay down so I can sleep on you and believe me I happily did. How many books have we read? How may puzzles have we done? How may hours have we spent playing video games? Best of all how much food have we eaten? While spending all that time at the hospital we've made a dinosaur 3-D skeleton, a volcano that exploded, pizza and tons of other stuff, always remember our secret me and you, partners in crime, the rule breakers YES WE DID IT we brought food and have eaten in the playroom at night , when everyone had gone or went to sleep.I remember when you were on steroids and totally obssesed with food, you insisted on daily outings to the grocery store, where you inspected everything on the shelves and we weren't allowed to leave until you felt the shopping cart was full enough. I remember the time you took the beans out of the chilli lined them up on the table and talked to them and ate them one by one. I remember when the bath tub started filling up with hair... I remember when I ran to the taco store in the rain because you were having one of your usual mean fits, you had whenever you woke up after a spinal. I remember the time we thought you relapsed how everything moved in slow motion and I couldn't hear or process what was being said. I'll always remember how strong you were and are. The time Karen accessed your port and she said "owie" while pressing the needle in and you looked at her like she was crazy and said that didn't hurt. Mostly I'll remember that your hand went for mine everytime they were just about to press the needle in, evethough your face never changed your hand always sqeezed mine and I hope you remember that MY HAND was there each and everytime. I remember the time you wanted to be strong you took that nasty dexamethesone by your self you squirted it in and said "aaahhh that tasted good" even though your face turned red, you started drooling and your eye's were tearing. I'd like to think you learned to be so strong from the time we were on the ride at Myrtle Beach the hot air ballons and it was making you sick and we put our heads together and I told you to pretend we were going down a water slide. You made it through fine and then I explained to you about mind over matter. Of course we'll all always have the Myrtle Beach and Disney World memories. They were amazing HUH? Just like you are my love we'll do some more remembering tommarow!

Sunday, November 04, 2001 at 04:42 AM (CST)

Well the spinal did not go well to say the least!!! My poor baby ended up with 5 holes in his back. Dr. Mary was not there which really through me off. Dr. Garaga was there and we have met him may times he stands in for Dr. Mary whenever she has off and he seems like a very nice guy, also he is a brain tumor specialist. So, I figured that a spinal would be a simple procedure for him. It happened so fast and Mikie slept peacefully through the whole thing but it was very upsetting to see. I hesitated to say anything because I didn't want to make the Dr. nervous. But after what I thought was like the 3rd needle, I started pacing and said to myself that if this one does not work I'm going to stop him and tell him we'll wait for Dr. Mary to come back. But it worked!! ahhuuugg It was terrible. He slept for a few hours afterwards. When he woke up he wanted to play video games in the play room. When we were about to leave he started to feel around on his back, the he said all flabbergasted " How come everytime I come here they put a bandaid on my back"? Thank GOD for DRUGS!!! It was such a huge relief to know he had no idea what happened. I was worried that his back would hurt him after all that but I don't think it did. He only complained once and he ran around and played normally the rest of the day. Lets see Samie and Daddy went to the basketball game Knicks vs Hornets. Mikie is not crazy about basketball. Shreck came out on video so we went and bought that. He liked that so did the rest of the kids. I liked it too, it was funny. Eddie Murphy does the Donkey's voice. We went to go see that new movie Monsters Inc. that was really cute everybody liked that too. Grandma and Aunt Renee and lindsay went also then we all went out to eat and then Crystalynn and Lindsay slept at grandma's. Mikie dosen't have to go back to the clinic until the 16th.

Thursday, November 01, 2001 at 03:15 AM (CST)

Well Halloween is over Mikie ad Kenny were both Batman, Samie was a cheerleader ad Chris was some kind of vampire thing.We wet to a h-party on Friday night the kids had fun then Saturday was Jesse's benefit, Samie danced she did good. Mikie seemed to have a good time he ate spaghetti and watched the whole dace recital. Sunday another h-party. He had fun did arts and crafts, a treasure hunt, decorated cookie's and a pinata'. Sophie and Cruz came, she had a lot of fun. yesterday we shopped for halloween stuff for the clinic- cups, napkins, dishes, treat bags, candy and arts-n-crafts. We went to a pumpkin store and bought 10 pumkins to give to all the kids and we made cupcakes and candy and caramel apples. Today we went to the clinic and made the cupcakes into spiders, cards ad just hung out. Then we went trick or treating on our block and thats it. Health wise Mikie has a cough that is making me a nervous wreck and sounds terrible to me. I had Dr. Mary listen to his lungs and she says they sound clear that it's upper resperatory so I'm trying to calm down, but I think I need to invest in a stethescope for peace of mind lol. Were going to just take it easy today. Tomarrow Mikie gets a methetrexate spinal and were going to see the movie Monsters Inc. oppening tommarow it looks really cute.

Tuesday, October 23, 2001 at 07:16 PM (CDT)

HEY HEY HEY

We got alot going on Disney was something!!!! Give a kid the world was great . I think the kids were a bit young for Disney World, but I'm sure they'll treasure the memories for a life time we also had a private tour of Nickalodeon studio's and Samie got slimed, We ate at hard Rock Cafe'. Me, Samie and Crys went on Tower of Terror. I think Mikie's favorite part of our trip was The Play House Disney Show and Thursday nite at the village is " Christmas in the village" He loved that. He made Christmas cards, sat on Santa's lap and decorated Christmas Cookies, we took tons of video's and picture's. Today we went on a hayride at a pumpkin patch. The kids played with baby chicks, picked their ow pumpkin ad played in bales of hay they had a lot of fun. I CUT ALL MY HAIR OFF. It's about 3 inches above my shoulders, no bangs, just a bunch of long layers and I put blonde highlights in it.

I don't know how to explain that our lives our back to normal, but I'm changed forever. Mikie is great,he is just a normal, happy and even appears to be healthy little boy.

I however can not relate to other's their lives seem frivilous, their care's, worries, priorities rediculous. Then I feel disapointed for judging others, but at the same time can not connect with others. Even with other CK parents, I have a hard time connecting with them because????? my son is fine. All the others we know from clinic are so worse off than Mikie is that we haven't shared the same experiences and really don't have much in common. Now i'm disgusted with my self for saying that, I know how many people could only wish to have my petty problems. See, See how confused I am? I don't know!! Ay suggestions?

Thursday, September 27, 2001 at 03:03 AM (CDT)

Hello All! Mikie is doing good. We had a scare this week. It was all mommy's fault. I was talking to a nieghbor when a man walked by, she said " what's that a turtle? " He said " yeah, you want it? " I said " I do " It was a big turtle, I just knew Mikie would love it. He loves reptiles and he did he was thrilled, then I found out turtles can carry samonella, then Mikie threw up and I was sure he had it, well he didn't and the turtle is gone. So I guess our house will be reptile free for the next 1 and 1/2 years. I just can't take chances. But it does make me sad, he's a four year old little boy and our house should be filled with, frogs, lizards, newts and turtles like it usually is. We always set them free after a while. I tell Mikie it's time for them to go home now and eat dinner or they miss their mommy or their mommy misses them ad he lets them go. Well enough of that when this is over we will fill the house up with reptile pets that we ca keep!!! NOW!!! DUM DUM DUM o a happy note we recieved our package from Make A Wish today we are all so excited! Me, Mikie and Samie spent hours at Disney.com lookig everything over ad talking about what to do. Now back to a sad note. When Mikie was diagnosed, the hospital hadn't had pediatric cancer patients for over a year, Dr Mary just came on staff a month before and they started accepting patients again. Sofie was her only other patient, She's a 3 year old with a brain tumor and she along with Mikie's diagnosis changed me 4-ever. Sophie is not doing well, chemo had been keeping her tumor stable for the last year, her last MRI showed growth. Their 2 choices are radiation or take her home and enjoy her! Sometimes I find it hard to feel happy over things like Disney World or whatever other frivalous thing that is going on in my life, when I know how much her family is suffering. It's so unfair!!! I just don't understand, or will I ever, there is no answer that would be good enough! well I'm goig to CMC's parent support group tonight. Crystalynn's assistant principal has a daughter that has recently relapsed with leukemia and his family usually attends these meetings so I am hoping to get to meet them. Then finally on Saturday our own hospital will have their 1st support group meeting and I'm pretty excited about that! Well like I said Mikie has been doing just fine, no problems

DISNEY WORLD MONDAY THE 1ST at 10:00 see ya

Thursday, September 20, 2001 at 04:52 AM (CDT)

Mikie is doing great!!!! we just finished the tough part of the protocal every 5 months he has vincristine 2 wks in a row ad steroids the whole week inbetween plus his ormal weekly methetrexate and daily 6mp. He breezed right through it no problem at all. He totally amazed us this time he's such a good boy he took that nasty, disgusting tasting medicine like a trooper. We have a ritual now. I get him some pop and some food and hand him the syringe, he squirts it in drinks his pop and pops some food in his mouth. One time he even squirted in and said ummm that tasted good lol as his face turned red and his eye's started to water. My baby, how lucky am I? MYRTLE BEACH was amazing we will remember it forever!!! The kids had so much fun every day was an adventure we went to amusement parks, water parks, zoo's, a reptile zoo, ripley's believe it or not aquarium, go cart racing out to eat every day, Dixie Stampede. We had a condo on the beach , high tide was 10 feet from our buiding!!! they swam in the condo pool and in the ocean and played in the sand everyday 10 more days and...... DISNEY WORLD!!!! We can not wait!!!! I guess I should mention Mikie's count are great and his energy level is perfect and no side effects!!

Tuesday, August 14, 2001 at 04:30 AM (CDT)

Mikie's doing great, we picked the girls up from the airport yesterday Mikie's partner [Samie] is back. Gradma set him presents a really cool helicopter that really flies, he loved it. His chemo agel sent him a huge Bear i the Big Blue House bear and tape last week. He really liked that also. The boys are doing a bit better with the kitten, but we still have to watch very carefully. Mikie has been riding his motorcycle everyday. Well there really is ot a whole lot going on except for the girls coming home and we leave for the beach Saturday. I can't wait the kids are going to love it!!! we'll be gone a week. Samie ad Chris start school tommarow and mikie is going to clinic today

Saturday, August 11, 2001 at 05:39 AM (CDT)

Hello Mikie is doing great he is adorable as ever.
8/2 we stayed home worked in the garden, cut the grass and stuff.
8/3 we went to the clinic just to visit! Sophie was there ad we hung out with her talked about pets and mikie and her had their picture taken together. After that we went to the hospital and visited Brittany, me and here colored jewlery on ourselves with the body art crayons I brought her. Mikie ad Kenny ate freezie pops. Later on that night Mikie started talking about Sophie and said he wanted to be her best friend. He decided we needed to color her some picture's of rainbows, so we did.
The weekend was uneventful, we just hung out at home.
8/6 - we went grocery shopping, came home packed a picnic basket and went to the park only stayed about a 1/2 hour and then Mikie asked to go home, poor babies they were sweating to death it was 98 out and the air was very thick.
8/7 - SPINAL CHEMO day. Emla cream is a cream we put on the port about a hour before it accessed and it numbs the skin it works great. Well we just got a new perscription for it , so it was in a box with an instruction booklet. Mikie took the booklet out and opened it, showed it to me and then folded it up and put it in his shirt pocket. When the nurse at the hospital started taking his bandaid off to access his port he pulled it out and handed it to her. She said " oh you think I should read this first? lol lol lol he is so precious. The spinal went well he slept peacefully through the entire procedure. That night we went to the movies to see cats & dogs apparently the theater bathroom was more interesting than the movie between Mikie and Kenny we visited it 12 times in a hour and a half.
8/8 uneventful
8/9 Mikie rode his motorcycle all day and asked me if we could take the kitty back to where we got it from and get a horse instead.
8/10 Mikie notified me that when rugrats were over I was taking him to the movies! I said no I'm not. He said " yes you are after your done doing your stuff your taking me to the movies" turned around and started to walk up the stairs and said " and I don't want to hear nothing else about it" lol we did not go but we did compromise and went to Dairy Queen instead.

Thursday, August 02, 2001 at 06:56 AM (CDT)

Mikie is doing great, Samie left for Buffalo yesterday. Mikie was real cool he said he's not going to miss her and he don't even care!! Silly little boy, he's going to miss her to death. Well he didn't want to kiss her goodbye. I held him down so she could kiss him lol. We went to the clinic Teusday it was very uneventful, he's looking good. This Teusday coming up he goes in for a spinal ughh I still hate them, almost a year later, But at least now I know he'll be fine. After the clinic we went to visit Brittany again, we brought our cotton candy maker and she had fun.Were going to do yard work today.

TO MIKIE,
Hello MY baby [you promised you be MY baby forever remember]You are 4 and 1/2 yesterday and god it is starting to show. I look at you some days and you look exactly like your father. Your personality is maturing you are going from my sweet little baby boy to a little boy so quickly. The changes are hard to explain but I see them, I feel them. You have become more friendlier in the last couple of weeks, you are seeking out friends. boy friends! I keep telling you that soon you'll have lots. Some children moved in next door-twins-boy-girl, boy-girl 10 and 13. Well one of the boys knocked on the door the other day and asked for you, I called you and said some one is here for you. He asked you if you wanted to play. I wish to remember this for life. You came upstairs and your face "was lit up" and you said MY FRIENDS WANT TO PLAY WITH ME, THERE BIG BOYS BUT THEY WANT TO PLAY WITH ME. You were so proud and happy and I was happy for you. The kitten thing is not working out son. Sunday you woke up much earlier than everyone else and cut off all the kittens hair from the middle of it's head down to the middle of it's back? wasen't happy with ya. You said that you had to because you spilled lemonade on it!! We caught you with the kitten in a pillow case, and he seems to meow alot whenever he's with you. You have been banned from touching it . But usually cry your way back to him within a day. I don't understand this behavoir!! I've talked to you about this, I said that your a little boy just like the kitten is a little baby and god gave you to me and daddy so that we will take care of you and love you and feed you and that you are the the kitty's daddy you have to love it and take care of it and protect it. That talk lasted about 4 hours , then you were right back to being mean again.Also Samie asked you to marry her the other day, you said no and that when you's grew up you will be marring another girl and she will be marring another boy Good answer baby. I am filled with love for you!

Saturday, July 28, 2001 at 05:33 PM (CDT)

Mikie and Samie went to the cancer kids summer camp mon-fri this week. They loved it !!! They made so many cool things. Bird baths and bird feeders and these were not your average crafts, these were amazing. Friday they ended it with a carnival. mikie, kenny and Samie had a lot of fun it was great. Crystalynn left for Buffalo thurs. morning all the children went to the airport to see her off. Friday night we went to the hospital to visit a new friend a 9 year old little girl that had just relapsed with rabdoidmyosarcoma. We brought her a whole suitcase of video's. Mikie was absolutely thrilled to go to the hospital on a visit that had nothing to do with him.All around he is doing absolutely terrific

Sunday, July 22, 2001 at 05:39 AM (CDT)

Mikie is doing great!!! Tommarow him and Samie go to the week long day camp. Friday we went to the clinic for a CBC. Everthing is fine. Me and Mikie tried the shopping thing again, he needed a bookbag, well he got one. I also lost the keys to the car. We were about an hr drive from home. Daddy came and got us, but that Kinda ruined the day. We have a new addition to the family. It's a teeny-tiny little kitten, it's only 5 wks old. I don't believe he has a name yet.

Friday, July 20, 2001 at 08:02 AM (CDT)

Hello all, it's been a while since the last update. Were all doing great. We havn't been doing much. Just the same old swimming and playing that usually goes on around here. We went to a hospital family outing thing on monday at a country club the kids had a great time. It was like a mini-water park. Mikie is going to clinic for a CBC today last clinic appointment we had a scare He's an e-mail I wroteyesterday I took Mikie to clinic for blood counts, They draw blood from his port and then we leave we never stick around to find out what the results are they always say they'll call if there's a problem which there has never been. So me and Mikie left the clinic [ about 11:30am] and went to Buddy Kemp Caring House [tell you more about this in a minute] Then went shopping, we got home at about 6:00 pm and my husband was flipping out he said the clinic's been calling all day that Mikie has abnormally high calcium and that I needed to bring him to the hospital right now which I did. I did not know what high calcium would mean. when we got there I asked the nurse at the desk what are the possible causes of too much calcium? She told me they were hoping it was just a lab mistake [ agghhhh that is not what I asked}. The next nurse we seen I asked the same question and she had the same reply . Now I started getting nervous . So I had the Nurse page the Dr for me. I asked her the same question and she said I think it may be just a lab mistake. I said if it weren't what could be the possible causes now she started talking all technical,medical stuff that she knew I wouldn't understand [ she's never done this before, she always explains things in simple terms, so I knew she was trying to avoid my question] So I asked her right out does it ever mean relapse or a secondary cancer? and She said I wouldn't think so in his case. Know I started pestering Nurses and they said they'd look it up in some book for me which no one ever did. Then I asked for the book which no one give to me. Then I caught a nurse in the hall with the book in her hand [ lol probably trying to hide it from me] It said Hypercalciemia, something about the thyroid, or a soft tissue malignancy[ secondary cancer] or hemotological malignancy [blood Cancer]. I didn't panick I just said that he just had blood counts done this mornings and his counts would of been off if it were a secondary cancer or a relapse. Luckily the results on the retest came back within 5 minutes that his calcium was in a normal range I'm sure if I had to wait 2 hours or something i would of worked myself up into a hysteria or something. PHEW that was scarey though them avoiding my question was the worst they could have done!!!!

Monday the 23rd Mikie and Samie will be going to summer day camp it's the 23rd-28th 9:00-4:00 I can't wait for them to go there going to have a great time and me and baby Kenny are going to go out and have some fun to. Crystalynn is leaving for Buffalo thursday morning and then Samie is leaving for Buffalo Aug 1st

Saturday, July 07, 2001 at 08:41 PM (CDT)

Mikie is doing great,he's feeling fine. He hasn't had any problems. Sunday we went to a picnic. Samie has a best friend, her name is Jessica. She lives here now! LOL They invited us to a cookout at there friends house and we went. They had a really nice in-groud pool , started off as steps then got deeper as you went along, there was a diving board at the other end. Samie was diving off the diving board into 8 ft of water and swimming underwater to the ladder. I was amazed. Mikie got in on the action.He jumped off the diving board once with an innertube on thats all my heart could handle! But it was very brave of him. They basically been spending alot of time outside playing. On the 4th, it started off as a beautiful day here, the kids wet over grandma's with daddy for dinner ad swimming. Jessica's dad works in the tallest building downtown,it's a beautifull building from floor to cieling all window, well anyway he works on the 28th floor. At about 7:00pm it started pouring down rain. We went with Jessica's family to the Bank of America Building and we watched movie's in this little mini amphi-theater and then at 10:00pm in pouring down rain The fire works began. It was so cool. The kids loved it. They started them off by LIGHTING UP THE BUILDING WE WERE IN ! real cool all these fire works were shooting up in our face's. I think we were one of very few who actually enjoyed fire works o the 4th here in Charlotte. I guess it sucked for the people on the ground and yes there were lots out there with their umbrella's but they couldn't see well because of the clouds . We however were eye-level with the clouds. Again It was really cool. Then Thursday daddy went to the store and bought a bunch of fire works ad shot the off in the frount yard the kids did sparklers and those things that pop whe they hit the ground. Well tomarrow were off to grandma's for Uncle Timmy's Birthday party

Sunday, July 01, 2001 at 12:40 AM (CDT)

Mikie's doing great, we've been swimming at grandma's everyday. Wensday we spent the afternoon with a family whose daughter was diagosed with leukemia whe she was 5. She is now 14 and cosidered cured it was great!! We had lunch and all the kids swam in the pool it was a nice day.

Tuesday, June 26, 2001 at 05:09 PM (CDT)

MIKIE"S HOME!!!!! well kinda, he's already at grandma's house swimming in the pool. But evertheless he is FREEEE !! YEAH for mikie. Now we just have to keep that poor baby out of the hospital. Samie started dace classes today. It's a 6 wk summer session. Papa might drive Crystalynn to buffalo Friday not definite yet . She has a plane ticket for July 26th. But she can't wait that long to see her Daddy. The phone has been ringing off the wall since the newspaper article yesterday and thats all for now

Monday, June 25, 2001 at 09:22 AM (CDT)

Were still at the hospital, There is a news paper article about our family today in our local newspaper. If you'd like to see it go to www.charlotte.com, them click on Charlotte Observer in the upper left hand corner, then health on the top of the page. Mikie is doing much better he is now having 10-12 hour breaks between his fevers. He was eating and playing alot yesterday. I'm still not sure when we'll be going home. We're still thinking it's just a virus they took some samples of his urine and feces to see if infact it is a virus. I'm hoping that he is fever free today so that we can go home tomarrow. We've spent 11 days at the hospital so far in the month of June ! That is is not counting the 10-15 Dr. appointments that we've also had this month.

Saturday, June 23, 2001 at 08:41 PM (CDT)

Well just as I suspected freeze spray does not work. Crystalynn was changing Mikie's shirt and hit his port. It stopped working. So they were going to pull it out and reaccess it which is painful without emla cream on first but we didn't have an hour to spare since it was in use.So I suggested That they just move it around a little and see if that worked. They very carfully spent a good 20 min. doing this and it worked we were all very happy. One of the nurses went to walk out the door to get some tape so they could tape the line back on him and she tripped over the line and it went flying right out of him. She screamed SHIT then looked at us like she was in shock then she started saying I'm sorry Mikie, I'm sorry baby and she started crying, then left. I didn't know wether I felt more sorry for her or Mikie?Because he had to be reaccessed without the emla.Needless to say when they finished he had a bed full of new toys. Well they have now performed every test known to man on my poor baby and can not come up with a reason for the fevers.The fevers go away with tylenol sometimes. If the tylenol dosen't work they give him motrin. The motrin works great but they try to avoid using it because it causes your platlets to drop. As soon as the medicine starts to wear off his fever shoots right back up to 104. We have no idea when we'll be going home this time he has to be fever free for 24 hours. He's up right now and feeling pretty good he was just telling his sister how he dosen't like girls because they have cootie's. He's sleeping alot though

Friday, June 22, 2001 at 02:47 PM (CDT)

Well, Mikie is back in the hospital. yesterday we went to clinic, everything went great he had some blood taken ad we left . He came home and slept for a few hours . Then all the kids went for a walk.they came home ate. Jessica came over. Mikie, Samie ad Jessica jumped o the trampolene for a while. Then Mikie ad Crystalynn walked to walmart. Crystaly has this obsession going on with tattoo's w/jewls in them. they came home and played and watched Tv. At about 12:00 am Ken said that Mikie felt hot [ of course everyone in my house was still wide awake. I took his temp ad it was 102, So I called the Dr and he said meet him at the hospital were the nurses were waiting for him and thought they were going to draw some blood without putting the emla cream on first. I said he needs emla cream on first. They said they had some freeze spray stuff that they would use. I said No, I don't know what that is and I don't know if it works. They said something about the Dr wanting the blood now I said well you better call him up then and do what you need to do. Then one of the nurses said to the other nurse we have to page him anyway. So she said well I guess you could and ask him if will be all right BLAH BLAH BLAH BLAH BLAH. I said No tell him that it is not an option his mother said he needs EMLA cream. Yes we got the EMLA cream. Unfortuatly, they had to take blood from his arm as well as his port , icase it was the port that was infected. They gave him some tylenal and he had some of his favorite potatoe chips and he watched a chipmonks tape and we got to sleep at about 4am. He woke up at about 10am with a fever and feeling terrible one of his eyelids were a little swollen. Don't know why but it ise't swollen anymore. They gave him more tylenol ad he was feeling good real soo. So we wet to the nurses station ad sharpeed 72 pencils with there electric sharpener It looked like Mikie was making weopons though. His pencils were very sharp and sharpened on both sides. he's at the hospital with daddy, Samie and Crystalynn. I'm home to take a shower nd cook dier which I will bring there later

Monday, June 18, 2001 at 07:10 PM (CDT)

not a whole lot to tell. We didn't end up going to the clinic friday.Mikie started his oral chemo back up on Saturday and he's doing great. he's been playing outside in the pool alot. Yesterday my dear children decided to bring the hose in the living room. YES it was on !!!! he made his daddy a card for fathers day yesterday. Today he went to grandma's to swim in the big pool and give papa his present.

Wednesday, June 13, 2001 at 08:52 PM (CDT)

Well were home !! We got home yesterday at about three o'clock. My babies are so sweet. I just love when I see them being affectionate with each other. Mikie and baby Kenny were hugging then Samie and Mikie came walking outside together holding hand. they played in their pool yesterday and today mikie cut his leg today. But he's fine. He hasn't been on chemo for a week now. Makes me nervous. The Dr. sent him home on an oral anti-virus medication. Were going back to the doctor's on friday and she'll tell me when he can start on chemo again.

Thursday, June 07, 2001 at 08:57 PM (CDT)

Mikie has CHICKEN POX this sucks he was immediatly admitted to the hospital.Where we have to stay in seclusion for a WEEK. They started him on some antibiotic and are making a great big deal out of it he's FINE. He has about 13 chicken pox on him with no other symptoms. I've seen him with more mosqueto bites than this and he's not even itchy? I guess having chicken pox when recievig chemo can have some serious complications . Neither I nor Dr. Mary anticipate that Mikie will have any though because his immune system is not that surpressed it's actually in the normal range I guess she's doing all this mostly as a precautionary measure.Meanwhile we will be trapped in a tiny little room for a week can not leave it for any reason. AN ALARM SOUNDS IF YOU OPEN THE DOOR!! Come on are they nuts or what ? If anyone wants to call us PLEASE do 704-384-4225. Lindsay is having a pool party Saturday . Were gonna miss that. He is absolutly loving pools this year too! Poor guy He knows how to hold his breath and go under , he just learned last week so thats all he does know even in the bathtub lol MOM WATCH THIS and he plugs his nose and goes under then comes up with a huge smile on his face . He's so proud of himself. OH well gotta go my fourlough from jail is over.Ken's at the hospital with him while i CAME HOME AND PACKED SOME STUFF PROBABLY NOT GOING TO GET TO USE THE COMPUTER SO see ya when i see ya

Tuesday, June 05, 2001 at 03:54 AM (CDT)

We never ended up with a definite diagosis for the swelling of the right side of his face. We went to the clinic yesterday and docyer Mary said " If it's not broken don't fix it" Short Summary:
Friday Mikie woke up with the right side of his face slightly swollen and complained of it hurting, I brought him to the clinic, Dr Mary was not sure what was wrong she said that the lymphnode on the side of his face was indeed swollen. She said it might be
Lymphsitis- infection of a lymphnode
mumps - Technically you can say this is also a infection of a lymphnode
She sent some blood to the lab to narrow the possibilities and prescribed an antibiotic
Saturday the swelling was gone and he said it did not hurt anymore.
Sunday Dr Mary called and said That some of the test results were in and now she thought it was a blocked salavary duct and if it is he would need to see an ent [ear, nose and throat Dr ]
still a chance it just may be an infection
Monday went to clinic and Docyer Mark said he looked great the lymphnode was no longer swollen
It may have been an infection and the antibiotic took care of that
or it could have been a blocked duct that corrected itself continue the antibiotic and let's not fix what isen't broken
So basically he's been running around playing and having fun with his brother and sisters, his spirits are great and his enerygy is fine. Samie is graduating from Kindergarden today, Mikie is going to get tested for pre-k this afternoon and Mommy has 1 day to write a grant and an upcoming formal meeting with Dr Mary and Kimberly [staff family and child therapist ] Busy Busy Busy . Update more on Thursday after Clinic hopefully Mikie's counts will be down.

Saturday, June 02, 2001 at 02:14 PM (CDT)

SORRY, SORRY, SORRY I haven't updated in so long alot has been going on i'll get back to that later.Mikie started his maintenence period and so far so good ! We went to the clinic on thursday and and he just had his counts checked and then we left. Next morning shortly after he woke up he was standing on the stairs talking to me ,I was looking up at him and it looked like he had chipmonk cheeks to me[ he did look very cute lol] I said to Ken does his face look swollen to you? He said"yes, he was complaining that his cheeks hurt last night. So I said your cheek hurts Mike He said yes . I called Dr. Mary and brought him in at 12. I was flipping out. I knew that his lymphnodes were swollen. So of course I assumed he had a secondary cancer of Lymphoma. What was I suppose to think last time I brought him to the Dr. for a backache he was diagnosed with Leukemia, Why wouldn't I think a swollen gland would't be Lymphoma? Well 1st Dr. Mary thought it was Lymphisitis[ an infected lymphnode] Then she changed her mind to mumps. We actually still don't kow what it is. We did start him on an antibiotic for an infection just incase and they sent some blood out to a lab to see if infact it is the Mumps which at the time we left she was pretty confident it was. I really don't know when the results on that will be back We spent the day there so as soon as Susan took the blood we were outta there,plus we were there half the day. The day before. Nevertheless niether conditions are anything to really worry about Today he is just fine running around playing and fighting like normal.So, everthing should be just fine. We have a new activity going on around here. Let's just say the theme around here is Gardens, Gardens,Gardens.We planted flowers in a bunch of huge flower pots [ so we can have fresh flowers in all our vases all summer and fall. The seeds sprouted up with in 3-4 days the kids have been very excited about this and check on them daily.We've also been working on a vegetable garden also.

Aunt Di where did you go? haven't heard from you in wks. Hope everythings ok! @ days ago you IM me ad I wrote back but you never responded?

Now listen to this I'm so excited!!!
Me and Dr. Mary had a long conversation on thursday about Blume Children's Cancer Clinic[ which she is the medical director of]and the Mikie Spero Foundation and what we sort of ended up with is callaborating to start some family support systems at blume's were not sure of all the legalities involved with the hospital[ her practice is owned by the hospital for now] So I am writing up a proposal and bringing together a series of facts about professional staff and parent groups working together on family support systems[ pros and cons , mostly pro's lol] to present to her boss. What were hoping to come of this is adding a PARENT ADVOCACY DEPT to Blume's ready for this ? I WOULD BE HEAD OF THE DEPARTMENT YEEEEEAAAAAHHHH YES ME THE HEAD!!!! Anyways my sometimes wonderful husband is taking the kids out today so I can get some work done bye

Wednesday, May 30, 2001 at 04:08 AM (CDT)

Hey everyone! Mikie is doing great! The house continue's to be full of children Lindsay, Jessica,the guy nextdoor's little boy Tylor.I think Mikie may have his first crush!! His face lights up when Jessica is around and yesterday we went to her house to pick her up and he brought her a gift,It was one of his beanie baby bears.He really loves those little bears,so it was cute that he decided to part with one and give it to Jessica. We had to rescheduale his appointment at the clinic this week. Daddy forgot Mikie goes to the clinic every teusday [for 6 months now]. Well traffic dosen't move very quick here in charlotte whe it rains.You can always count on a number of accidents to hold you up when it rains in this city also.He usually gets home from work between 8:00 and 9:00 o'clock every morning but yesterday he stopped off at the hotel where a friend of ours from Buffalo was staying.A close friend of ours was in Charlotte working for the last 10 days and he was leaving yesterday.So Mikie will be going on Thursday to the clinic. Also, Mikie was haging out with Brad Miller on Monday for a little bit. Mikie's Uncle Tim [Ken's Brother] work for the Charlotte Hornet's,he is a top executive in there office. So he is good friends with many of the players. Brad Miller plays for the Chicago Bulls,but was a Hornet before being traded to Chicago. He was in town for the three day memorial weekend and he stayed with Uncle Tim.So the kids went to Uncle Tim's on Monday for a couple hours. Yesterday Mikie recieved a package from his chemo angel it was a sponge paint kit. While he was opening his package he said " why her keep sedig me stuff " I said "I don't know" [I was reading the mail lol]He said "I think it's cause she loves me" I said "I think so to" Well of course him and baby got right to work on the sponge painting kit.The pediatric phycoligist from Carolina's Medical Center [the other hospital here in charlotte that treats pediatric cancers] called and while we discussed The Mikie Spero Foundation,Mikie and baby Kenny went nuts! Let's just say that after I got off the phone Mikie and the baby had to take a bath , while I pulled out the rug cleaner and washed all 6 of the dinning room chairs and half the rug in there! But I did recieve some beautiful pictures of sponge painted red hearts from Mikie! He made me that first before they mixed all the paint together ad turned everything brown lol. Speaking of brown.It has been raining here in Charlotte and there are mud puddle's under the swings.Mikie and his partner in crime [ baby Kenny] started off playing on the swings and before you know it they were splashing around in the mud like a couple of little piggies.IT WAS SOOO CUTE.I just sat back and watched them and was thinking about all the great memories I'll have of their childhood when they grow up.After their mud bath they had a bath in the pool They had a great time in there to,they were jumping in going under water and everything. Mikie was so proud of himself. Of course the first time he went under it was an accident then he kept jumping in and going under over ad over again yellig watch this MOMMY.He was performing tricks for me his version of diving and cannon balls.

Saturday, May 26, 2001 at 08:23 PM (CDT)

There is a new beanie baby out it is Issy the bear. TY is donating all proceeds from the sale of the bear to cancer research. I bought 1 for Mikie today. Mikie has been feeling good since the last update.The temper tantrums are subsiding.Our house has been full of friends. Samie's friend Jessica comes over everyday,sometimes one of her older comes along with her. Housten and his mom and baby sister were over most of the afternoon yesterday. Mikie loves babies. Isabelle is her name she's a little over a year old. Mikie followed her all over the house and held her hand whenever she went up and down the stairs. He's so sweet.Today daddy took everyone swimming over grandma's all afternoon.They love swimming!!! Lindsay is over and spending the night.Oh yeah I recieved a letter in the mail saying that Mikie is eligible to go to the head start pre-kindergarden,next school year . I asked him if he wanted to go . He said YES We'll see

Wednesday, May 23, 2001 at 05:41 AM (CDT)

Wow,things are pretty tough around here.Mikie has been going on rampages, over the most minor things and there is no reasoning with him. Other times during the day he is his sweet,quiet, gentle self though.He'll run up to me ,with a huge smile on his face,throw his arms around my neck ,squeeze real hard and kiss my face.We're living with Dr. Jeckyl and Mr. Hyde.I'm really confused on how to handle him though. I know that his ugly behavoir is because of the steroids. So I basically give into whayever he wants. The other kids think we're crazy. They want to beat on him .Then they see me being nice to him.It must be very confusing to them.I could handle the screaming and yelling and crying and all that . But when he starts hitting himself and scratching his face. I cave! Luckily this should be over within a couple more days .Yesterday was the last day he had to take the steroids and he won't need to take them for another 5 months.On a happy note,Mikie has been wanting cowboy boots for some time now. But there so exspensive I havn't gotten him any since he'd only use them as play shoe's.Well I found a pair at walmart for $15.00. lol
Yesterday we went to the clinic. Mikie wore a red cowboy hat,jeans, a button down shirt,cowboy boots and some black lens sun glasses.lol You had to see him him.Well he got his vincristine in his port and blood counts done.His blood counts came back looking great.He took his oral chemo at home yesterday for the first time.They are real tiny little pills,every teusday he will take 5 once a day he does not mind at all.The first pill he wouldn't take,he was worried that it would leave a nasty taste in his mouth.Somehow it ended up in the dryer.He tried to pretend that he took it and stuck it in there lol But I caught him. Once I finally convinced him to take one that they don't taste at all he took the other 4 with no problem.Within 1 hour he had diarrhea.Luckily it only lasted a few hours.He seems back to normal already.The vincristine side effects didn't kick in yet,so he had a good nights rest last night

Sunday, May 20, 2001 at 05:02 AM (CDT)

Hello everyone. Mikie is doing good. The steriods have taken effect! He is having temper tantrums that are beyond belief. There definatly the worst ever. He's making VEROUKA [from the movie Willie Wonka and the Chocolete Factory} look like an angel.Yesterday was the foundations 1st fundraiser.I'd say it was pretty succesful. Not only did we raise aproximatly $1000 but I also made a couple very valuable contacts.I had a lady from The Charlotte Observer [ local newspaper] volunteer to speak with the big guy's at the observer about doing a feature story on the foundation !!!! Well I brought Mikie up on stage and introduced him to everyone,he waved to the crowd,it was cute.I explained how I started the foundation in honor of Mikie and his courageous battle with leukemia.Well he had a huge temper tantrum so huge I hailed a cab down and took him and baby Kenny home in the middle of the event leaving Ken and the girls to man the ship. The Mc was explaining to the crowd about the foundation and one of the things he mentioned was family day out and going to the zoo. Well Mikie decided that he wanted to go to the zoo. RIGHT KNOW!!!! he started crying and yelling and pulling his own hair and just was really out of control he was inconsoulable for over an hour when I decided I really just needed to take him home. I was a bit dissapointed that I had to leave. But it was ok and I was very tired myself. Well I have created a new website for the foundation and I think it turned out excellant you can check it out if you like. I changed the link below or type http:// mikie.spero.cc and go check it out your comments are welcomed

Friday, May 18, 2001 at 06:19 AM (CDT)

Well Mikie is back on dexamethasone [steroids] this week .He hates this stuff it does taste really disgusting. The first dose I gave him he spit out . Then after I chased him through the house [lol at least he was laughing until I caught him]he threw up he had just drank a glass of chocolet milk. yuck. The next day was a little better, there was no throwing up at least .But he does run away, hide, scream, yell, cry and beg not to take it.Boy are we lucky he only has to take it for 7 days every 5 months.His feet are also bothering him from the vincristine. Mainly at night. He said it feels like something is biting his feet.Rubbing them helps.So I have been rubbing them until they feel better.He is also extremely nasty, temper, temper, temper. Now don't get me wrong he is not spending his days in pain or misery or anything like that. He is happy for the most part. He's been running around and playing like usual.

Wednesday, May 16, 2001 at 03:42 AM (CDT)

VERY HAPPY YESTERDAY IS OVER!!!! Mikie went in for his spinal tap/chemo.It wasn't to bad.Well it's been worse anyway.The procedure went smoothly he was out during the entire time.But when he did wake up a few hours later he was nauseous.They won't let you leave until you can drink something and keep it down.My poor guy wasn't able to keep anything down the entire afternoon.We got out of there at 2:00pm we went in at 9:30am.He also recieved vincristine[chemo] in his port. He did great at home . He wasn't nauseous or anything. Him , Samie and the baby played outside most of the day

Monday, May 14, 2001 at 04:25 AM (CDT)

All in all we had a very nice mothers day ,my samie gave me 3 gifts! She was bursting with excitement.The day started off a little rough.The toliet in the upstairs bathroom overflowed and nobody said anything to me about. I was downstairs in the kitchen when I noticed water leaking from the cieling in the livingroom in about 7 different spots.I went running upstairs and water was still gushing out of the toliet! wHAT A DISASTER!Me and all the kids took a long walk in the woods ,Mikie and Samie were in charge of picking wildflowers for the vase in the kitchen.Thier really pretty yellow and white daisies.Baby kenny stepped in a pile of mud and his foot sunk to his ankle, lol he was stuck there, lol and he had sandles on. yuck! Then Me,Samie and Crystalynn went to Kohl's and bought grandma some presents.Went back home picked up Daddy,Mikie and Kenny and we all went to grandma's house.The kids went strait in the pool.They came out to eat some pizza, then went right back in they had a lot of fun it was great.I was thinking back to last year.Towards the end of Summer August and September Mikie must of had leukemia but we didn't know it.We go over to grandma's fairly often she lives right up the street about 2 blocks away.All the kids would go swimming and Mikie couldn't wait to go swimming either but he'd get in the pool and be back in the house within minutes,tired and would just lay in papa's bed and watch cartoons ALL DAY. Poor little guy had no energy.My mother-in-law even started lecturing me about Mikie spending to much time in front of the television!At first I didn't even notice then I started wondering why he was alway's in the house and not swimming and playing with the other kids.NEVER DID I THINK IT WAS LEUKEMIA!!! But now in hind sight thats what it must of been.So it was exspecially nice on Mother's Day to watch my baby Swim in the pool ALL DAY!!! BACK TO HIS OLD SELF.

Sunday, May 13, 2001 at 05:51 AM (CDT)

Mikie of course is doing great! he found the frog shortly after he woke up.Never mind that he shoved the poor thing into the small hole of a ceramic bank and then couldn't get it out.of couse he did not have the patience to wait for it to come out on it's own so there were a few temper-tantrums thrown lol he cracks me up!Well he had a good day .He tried to venture out with me on my canvasing of the nieghboorhood.I have been handing out flyers and brochures about the foundation door to door.WE didn't even finish a 1/2 block,his face became flushed and he complained of being tired so I drove him back home poor little guy Well happy mothers day to everyone

Saturday, May 12, 2001 at 05:37 AM (CDT)

Hello everybody,finally I have something to write about.Yesterday was interesting to say the least.Mikie came in the house with a baby bird rolled up in his shirt!He just walked through the living room right past the tv and headed for the stairs.His dad said hey Mike what do you have in your shirt?Mikie looked at him for a minute,then said "A BIRD" [quickly] and starting walking away lol! So we actaully nursed the bird back to health! We put leaves ,grass,dirt and tree branches with thier leaves still on in a huge cage.To keep him protected from the numerous creature's that roam around at night.Mikie held him while I forced it to drink water with a medicine dropper ,then we left it to rest for a while in the shade.At that point it was close to death it actually laid on it's side for about 5 minutes and I thought it was dead Then all of a sudden it just popped back up.So it rested then later on I gave it a mixture of water and bread in the medicine dropper.I literally had to force feed it!But I am happy to report that I was just outside checking on it and it looks great.It's health has been restored! Does anyone know what to do with a healthy baby robin? lol Seriously though.What do I do with it now? It dosen't know how to fly.Well as we speak there is a frog on the loose in the house somewhere.Last night me and Samie and Crystalynn put flyers and brochures in probably 200-300 mailboxes .We were out until 10:30 at night.Well anyway Chris found a frog and of course we brought it home to Mikie.He was absolutly thrilled.After Samie finished her bath,he had it in the bathtub and everything.Well we were keeping it in a shoe box,but the box is empty now.He's not going to be very happy about that when he wakes up! He's doing great. He appears to be feeling fine,he dosen't complain about anything except his baby brother.lol

Wednesday, May 09, 2001 at 02:45 AM (CDT)

Hello! Been awhile huh?Busy , busy, busy around here.Mikie had a bone marrow aspiration and spinal tap yesterday.He did fine.he went in at about 11 am and we didn't leave until 4 pm.He was sleeping he woke up a couple times,but would go right back to sleep so finally at around 2pm I climbed in the bed and went to sleep with him lol.It was definatly a benefit for him to sleep so long.When he did wake up he felt good and was ready to go.His back of course was sore for a while but I encouraged him to walk on his own and within about 2 hours he was running around annd back to normal.So Dr. Mary is going to call tomarrow with the results.I know that he is free of leukemia cells though! I not worried at all.Well I'm glad thats over he will not need another one for at least 1 year! yeah next teusday he will get the chemo in his spine.But then he won't have to do this again for another 3 months.

Thursday, May 03, 2001 at 07:12 AM (CDT)

Sorry I don't update as often as I used to Mikie is doing great though there's nothing much to tell he act like your normal, average child It's real hard to believe he's so sick!If you don't know him you could never tell.To tell the truth I can't even remember whats been going on around here.I am so so so busy it's not even funny.I am printing up 2000 bussiness cards,brochure's and flyers.Getting ready to have to birthday parties sunday.Samie's is 12 pm to 3 pm and then crystalynn's is 4 pm to 7 pm.Yesterday baby kenny fell off the kitchen counter and hit his head really hard we were really worried about him then at 3 am he started vomiting so I took him to the emergency room and they gave him a cat scan and said he was fine .He has a very mild concussion.Well time to get back to work!

Tuesday, May 01, 2001 at 06:12 AM (CDT)

Mikie is doing really good.He's feeling good and looking real good.We went to the clinic yesterday and Dr. mary said he's doing extremely well. She explained the maintenance part of the protocal.He is so lucky.The protocal he is on is brand new.The old one calls for a shot of methotrexate in the leg 1 time a week for 2 1/2 years.They now changed it to a oral form.So he is the first child Dr.Mary will be treating this way! Unfortunatly for the other children once your put on a protocal you can't be taken off.So they will still continue to get the shot even though the oral form is now available.Well the new protocal consists of A spinal tap every 3 months!! yeah ,much better than the every 3 weeks he was doing.Every 5 months a shot of vincristine in his port 2 wks in a row plus 7 day of DEXAMETHASONE the dreaded steroid lol he does just fine though because its such a short period of time ,then a pill everyday of 6 mp and a pill once week of the methatrexate! After the office we took a walk uptown to the Duke Endowment library[dedicated to non-profits] It was on the 35th floor of the bank of america building.Mikie was very excited the windows in the building were from floor to cieling it'a a beuatiful building but he couldn't get over how everything looked so tiny and the people looked like ants he also liked or should I say being carried around uptown during bussiness hours.We've only really been there on weekends for special events.So he felt like he was in a big city with all the bussiness people walking around and all the tall buildings.He learned a new word yesterday.Skyscrapers!It's so neat how simple things are so new and exciting to little ones.Than last ight The Make A wish People came they brought him a bag of goodies and they were so nice.WERE GOING TO DISNEY WORLD!!!!! In mid-october so it's not too hot since he dosen't like the heat.He and the other kids can't wait.THAT's ALL FOLKS

Sunday, April 29, 2001 at 06:41 PM (CDT)

My comouter was dow yesterday I thought I would go crazy.I pulled out wires trying to hook up a new printer.But Tim fixed it!But he did not hook up the printer.The foundation is working in crisses mode,3 weeks away from it's first fundraiser and not one drop of literature to post or hand out.If anybody knows what commad line is used to install a cd-rom please e-mail me immediatly.Mikie's doing good.He seems to be sensitive to heat though we went to a childrens art festival yesterday and he was miserable ,he wanted to be carried and complained of the heat . He didn't want to join in any of the activities.which is highly unusual for him because he lives for arts and crafts.He did however paint to green paintings.2 papers completly saturated in green his favorite color of course.lol Then we went to grandma's for dinner and happy birthday cake he seemed fine the entire time we were there.When I was trying to fix the computer Mikie stuck his head in and was being very inquisitive asking what's this and what's that and he kept saying what's that a chip [meaning a computer chip] lol it was funny the things he comes up with

Saturday, April 28, 2001 at 06:34AM (EST)

HAPPY BIRTHDAY MISS SAMIE SPERO!!!!!My baby is 6 years old today as a matter of fact you were born right around this time exactly 6 years ago today.It was between6:30am and 7:00am.You are the little girl mothers dream of having,beuatiful,sweet,kind and caring with just enough attitude to always stand up for yourself and let no one push you around.Your self-confidance is limitless and amazes me.You are funny and entertaining.Samie girl you are so so so so SMART,Way smarter than I thought you were or could ever hoped you'd be.Everytime I see Ms Deal[kindergarten teacher]she can not say enough good things about you.She adores your spirit!she says just looking at your happy little smily face coming down the hall every morning brightens her day.She talks on and on about your willingness to learn and loves your never give up attitude.Not to mention how you really, really surprised us all with how quickly you learn and your comprehention level.We were just a little worried that since you've never been to day care like most children nowadays and were a bit behind than most of the children that you wouldn't do so well at first anyway.First parent/teacher conference relieved us of those worries Ms. Deal said you are the child that has made the most progress in her room and then she whispered to me that honestly you know more than the children that have gone to day-care and the head start pre-school!!! YOU GO GIRL. I hope these qualities stay with you for life. Anyway,SORRY everyone I know this is Mikie's journal.But I had to brag about my baby girl at least once and let you know that Mikie is not the only terrific child I have.Well he's doing great energy is fine,voice is still gone.He hasen't been mean or nasty the usual bicking of course continue's daily but we can't blame that on treatment lol.Mikie wants to go to the movies and see Spy Kids! We'll have to do that next week

Thursday, April 26, 2001 at 09:20 PM (CDT)

Mikie is feeling good! He was running around playing in and out of the house today his energy level seems fine.Appetite is fine,no mouth sores,coloring looks good.his voice is almost gone though poor little guy sounds pitiful he can barely talk above a whisper.But he is glad to be home.He was in a pretty good mood today also.No complaints

Thursday, April 26, 2001 at 06:10 AM (CDT)

WERE OUTTA HERE, thats what Mikie yelled when we were getting on the elevater at the hospital to go home.I could only imagine how good he feels knowing he dosen't ever have to go back.I know I feel like a huge wieght has been lifted off my back.In all honesty if there ever was the need for hospital stays PRESBYTERION is the place you'd want to be.Yesterday he woke up took a long bath,went to the playroom ,went to the cafeteria,he made cookie's with caroline[volunteer]Then the art lady came to the room and read a book to him and they did some art work ,then me and him played nintendo 64,then he watched tv and took a nap.When he woke up Daddy,Samie,Kenny and Crystalynn were all there.There were a little boy and girl that were staying at the hospital with there mom because thier baby brother is sick .So all these guys got together and had a ball they were eating popcycles,ice cream and sherbert by the dozens and they went from the playroom to the outside deck a thousand times they all had a lot of fun.Around 7:00pm and said we could leave we packed up and were out of there like a tornado was about to hit! Mikie is and was feeling fine.He's always quite a bit more miserable after coming home from the hospital it's hard to tell if it's from getting so much attention at the hospital or the chemo is just making him feel icky.I'm sure it's probably a little of both.He has his normal voice loss but besides for that he's great.One more thing.Apparently Mikie felt a need to draw some blood from his line yesterday!When we were playing nintendo 64.Actually I play and he watches thats the way he wants it so his nurse came in with his oral medication ,leucovoran,I gave it to him,The syringe that I gave it to him in also doubles as a syringe that you can screw a thick needle on to and use to access his line.So when he fiished taking the leucovoran I gave him the syringe he likes to play with them and his nurse drew some blood from his line and left.I was laying on the bed playing the game for him and he was sitting on the bed right behind my head with his new little bear a couples minutes went by and he said mama look what I found he had the needle srewed on the syringe I said were did you get that from and he said I found it right here on the bed.So I let him keep it ,It's not a sharp needle,it's just like a thin metal stick.He was useing it to play with his bear ,he was an inch away from me.A couple minutes later he said mama and I looked at him and he was pointing at his line which was filled with blood.I said what did you do did you stick that in the line? He shook his head yes.CRAZY!!! It really wasn't a big deal.I went ad got the nurse and she flushed his line.There is the risk of infection of course but I think he'll be fine

Wednesday, April 25, 2001 at 07:29 AM (CDT)

Everything went great yesterday!Mikie woke up took a bath,played in the playroom,went down to the cafeteria,watched some video's,then we took a nap together and when we woke up it was PARTY TIME end of hospital treatments Daddy,Samie and Kenny came and we had pizza and cake a couple of the other patients gave him presents,he got a little bear which he really liked and a car and play dough.Dr.Mary brought him a really cool cookie it was a car decorated really cool then Mrs. Francis gave him presents to open.He got a big art activity set,playdough and a helicopter that comes with an electric screwdriver and you can take it apart and put it back together.After the party he played with his brother and sister and me and daddy .I haSamie in a wagon and Daddy had Mikie and Kenny in another and we had races lol.Definatly not a hospital activity but we snuck around and did it for a while,until Samie fell out of hers{she didn't get hurt]and Daddy said we better stop before Samie ends up in the bed next to Mikie .They stayed until the bickeringg became unbearable.'m so glad we don't need to come here anymore it really is hard on baby Kenny I think he thinks were her on vacation.I'm sure it is what it looks like to a two year old plus he misses me and knows I'm not coming with him.So needless to say he is not the most pleasant person while were at the hospital.I really feel bad for him .But it's all over now.Kenny tried to lure me to the car when they were leaving he said you wanna come car me mom? wanna come car me? AHHHGGHHH He's so adorable it breaks my heart to tell him no I can't!!! Well after they left I played super nintendo with Mikie and we went to the playroom until about 11:30 pm then back to the room where he watched tv and played with his new stuff until about 1:30 am. He is feeling great and everything is going just wonderful as I expected

Tuesday, April 24, 2001 at 04:23 AM (CDT)

Ok.so I left off with "things get a little complicated here" Mikie has a really wierd side effect from the anasthesia's he recieves,when he comes out of them he is very mean and demanding,which is EXTREMLY wierd for him because he is a very sweet,passive child.Well sometimes when were in the PICU the pediatric intensivist who is in charge back there makes MIkie stay for 4-5 hours.Sometimes we only stay for 1/2 hour.It is extremly important that Mikie lay flat on his back and still for 1/2 hour after there done with the tap so that his spinal fluid has a chance to even out what they took out and put in .He could end up with a severe headache if he dosen't.Well for some reason when he does become full consious he demands to go back to his room immediatly, and becomes hysterical if he can not.So before they started the proceedure I heard them talking about the drugs they were going to administer they were phentonyall[for pain],versaid [concious sedation] and catamine [pretty much knocks you out].Now in the past I've always been aware that they are giving Mikie the phentenyal and versaid.So I was thinking that the reason he had to stay 4-5 hours sometimes compared to the 1/2 hour was because sometimes he recieved more drugs than other times and of course Miss know it all[me] opened her big know it all mouth and suggested that we don't give him to many drugs so he could leave there sooner!So Dr. Mary said sure lets not give him the catamyne.She did assure me however that in the hundreds and hundreds of spinal taps that she has done she has never administered that many drugs[phentonayll,versaid and catamyne].Also if he becomes uncomforatable during the proceedure they will administer the catamyne.Now the reason I wanted to lesson the drugs was actually all for him I had absolutely nothing to gain by it.I thought because we left out the catamyne he'd be able to leave the PICU quicker which is what he wants he hates in there the minute he opens his eyes he starts crying that he want to go back to his room and that he's hungry.It's very boring in there no tv or anything it's just 4-5 spaces in front of a huge nurses station the spaces are either filled with beds or tiny little metal cribs with babies in them hooked up to millions and millions of things.These spaces can be separated by curtains.However I would like to mention that any staff member we came across back there has been exceptionally kind and wonderful.So getting back to the subject.They gave Mikie the phentonayl and versaid and everything started off just like it usually does Dr.Mary started off with a shot of novacaine to the site like always.He made a tiny little face but fell right back to sleep.Then she looked for a good spot to put the needle in when she was putting the needle in he made a couple facea and wiggled around a bit and me and susan immediatly started saying yeah he needs more and we think he needs a little more usually Dr.Mary will say give two more cc.But she didn't this time and honestly I thought that once the needle was in he would be fine because when he did seem to be a little concious of what was going on if Susan or I talked softly some comforting words to him he calmed back down immediatly.Dr. Mary drained the 10 cc of fluid really quick.Which is the longest part of the proceedure.Then when she was putting the chemo in which only takes 30 seconds he became hysterical and susan started yelling for more drugs,it was funny she is so sweet.We had to restrain him while she took the needle out which is another 5 seconds.The thing is ,is that he hates to be restrained probably more than anything.So it went down hill real fast .Dr.Mary was just applying pressure to the site with a gauze and he started going nuts and I mean nuts he was screaming and yelling and kicking and pounding and it really was terrible I felt really bad for him .He started screaming about going back to his room and that he wanted food NOW.Me and Susan and Dr. Mary tried to do everything we could to calm him .But he would not be calmed he just kept screaming about wanting to go back to the room and eat.At one point Susan said for me to go out of his eyesite,while she tried to calm him.I immediatly ran back to the room and grabbed a plate,apple,knife,sugar,cinnamin and watermelon.Needless to say he just became more hysterical {if it was possible]screaming I want my mommy.I tried everything laying in bed w/him,rubbing his head,whispering in his ear,bribes.Nothing was working.He calmed slightly when he seen the food for a minute or twoo .I put a piece of watermelon on his lips it calmed him briefly but he did not eat it because he was still feeling really drugged after this went on for 20 minutes .They gave him a mild sedative to calm him down because don't forget he was suppose to be lying down still and flat to prevent the headache.He calmed down for maybe 3-5 minutes,in that time Dr.Mary and Susan left they had to get back to the clinic.They left instructions that he should remain back there 25-30 minutes .He became hysterical,he was basically jumping,kicking screaming it was horrible,I tried everything and nothing even had the slightest effect on him so I had the PICU nurse call Dr.Mary and tell her we needed to go back to his room now.I said ya know this is completly defeating the whole purpose of him being back here .The reason he's back here is to lye flat and still and he is not .He needs to go back to his room so he could calm down and do that of course Dr. Mary said ok! Sure enough as soon as we walked out that door he was fine.He started his feeding frenzy as soon as we got back to the room I can't believe all that he ate throughout the day he had,3 apples,watermelon,1/2 of a donut,salad,a dish of fetticini alfredo,applsauce,peanut butter sandwich ,m&m's and popcorn.lol The rest of the day went great we made a frame out of popcycle sticks ,He painted,he had fun he made a huge mess and mixed all the paints together he had a ball.Then he wanted to watch TV and he fell asleep.I thought he would take at least a two hour nap,because he does at home so I came out here to the computer and started writing the other entry well I went back to the room for some reason and when I got there Dr. Mary was in his bed and he was sleeping on her.I WAS IN SHOCK.He woke up as soon as he heard my voice.Me and Dr.Mary talked briefly and she left.Me and Mikie laid in bed for a while then went to the play room. Susan called me from home like she always does to check up on him and we just talked about all that went on that morning.Then I said Guess what? I said Mikie fell asleep and I left the room and she cut me off right there she said I already KNow.Dr. Mary called me and told me because she was so excited.Dr. Mary told her that she was on her way to his room and the nurse told her he was sleeping but she went anyway so when she got in there he woke up and he was alone[well ya know besides for her]he started to cry a little and she picked him up and he snuggled right into her and fell asleep on her.She said she was in heaven she just wanted to stay there all afternoon and hold him and she didn't want anyone to bother her and what she was most excited about is that he looked up and knew it was her and still felt totally comforatable and snuggled and slept on her.Never in a million years could I explain how I feel about this,I'm getting all chocked up and the chills just telling this story.No body ever will be able to tell me my son does not have the best Dr. in the entire world I don't care What they tell me Childs DR is like.NEVER in a million years could I ask for 1 drop more!! Then to have Dr. Mary teamed up with Susan is like a dream come true it's like almost unfair that 2 such perfect,wonderful and loving people be at the same place it's like some of that love should be shared with other patients elsewheree Mikie regardless of the leukemia you are a lucky boy baby!.Well we just spent the rest of the day in the playroom and on the outside deck.IT was beuatiful out today in the 80's So we played his bowling set out there But we did not play traditional bowling our game was that mikie dropped the pins of the deck and I went down stairs and tried to throw them up through the bars.When I could breath no longer I went back upstairs and we had a picnic on the deck ,He watched video's in the playroom and then played with blocks[actually he was taping them all together lol]and watched more video's until he fell asleep probably around 12:00am.Oh yeah one more thing a volunteer asked me if it would be ok to have a pizza party for him teusday at 5:00,"a end of treatment party" because he will no longer need to stay at the hospital inpatient for treatment anymore,everything will be outpatient at the clinic from here on in .Of cours i said yes! That is so nice.AND FINALLY I'M DONE

Monday, April 23, 2001 at 02:15 PM (CDT)

Oh boy,oh boy ,oh boy,I guess I have been doing to much bragging on how wonderful Mikie is doing and how he dosen't suffer any complications blah ,blah,blah,blah,blah.Because this time around has not been a very pretty picture!!!! Dr.Mary suggested that we try something new this time around and that is that we come in late in the evening and pre-hydrate Mikie over-night.Do the inthathecal chemo in the morning and then start the 24 hr chemo.Well it did not work out very well.We got to the hospital last night at about 8:30 got settled in .Mikie watched some video's and was eating watermelon,fetticini alfredo,and then fell asleep.Well we woke up at 5 minutes to 9:00 at around 9:00 the nurse came in to say he was going to the PICU now,at the same time an orderly came in the room to get him.I said I will bring him there .Also a student nurse came in to introduce herself and let me know that she will be spending the day with us for the next 10 minutes these 3 people came in and out of the room and kept speaking repeatedly about "THE PROCEEDURE" Well immediatly I knew there was something wrong with Mikie people in and out,there talking about stuff there going to do to him but not to him or in terms he could understand.It was totally overwelming and not to mention we had just woken up 5 minutes prior to this.Normally the way we have done this is that we wake up at home and are fully awake and ready for the day by the time we reach the hospital.Of course I do not ever make Mikie feel overwelmed or intimidated by going to the PICU.Also it bothered me a lot to think back to when Mikie was a newly diagnosed patient and we did not know what to expect from the proceedure.This very well could of been the reason I ended up crying on a bathroom floor instead of being strong and standing by my son's side.Anyway things get a bit complicated here.I will have to finish this later Mikie woke up and wants to lay in bed with me.He's doing fine he's just tired

Sunday, April 22, 2001 at 04:55 AM (CDT)

Mikie's been doing great! He's been enjoying having his sister Samie home from school.They are so precious together.They love eachother so much and they play and just spend the entire day together.Sometimes I see them hugging or holding hands it's just so so wonderful.I love to listen to there silly conversations they have when they don't know anybody is listening.I so happy they have eachother.It's warming up around here it's back in the upper 80's.Unfortunatly Mikie will be in the hospital all week though.Were going in at 8:00 pm tonight.Dr Mary wants to do things a little different this time when we go in they will hook him up with the IV and just leave it there over night so he will be well hydrated before they start the chemo.THIS WILL BE HIS LAST INPATIENT TREATMENT!!!!! :0) He's very happy about this.I told him yesterday Mikie we have to go to the hospital in 2 days and he said I know.I said But GUESS WHAT this is the last time we have to stay there from now on we only have to go to Dr Mary's office!He started jumping up and down with a huge smile on his face saying I know, I know, I know. I'm so relieved because he will not need a spinal tap every three weeks now .I think it will be every 3 months now.The procedure it self is not much of a problem.Mikie does fine with them He's totally comforatable with the situation and sleeps through the whole procedure.The thing that is upsetting is all the little scar's on his lower back there has to be at least 15-20 of them it looks terrible and just make's me sad to see!

Friday, April 20, 2001 at 12:50 PM (CDT)

Not a whole lot goin on around here.Mikie is doing great.It's starting to warm up so they have been playing outside.With every spring brings the bug facination,they spend most of thier days digging in the dirt looking for worms,looking under rocks for bugs and wading through the creek for tad poles and crawfish and whatever else they could find.Oh and I couldn't forget to mention the occational frog ,lizard or turtle.That happen upon our yard and are unfortunate enough to be captured by my children,Who proceed to LOVE them to DEATH lol.I don't think that I ever mentioned that there is a creek running through our side yard that is is filled with ankle deep water or that right behind our house there are woods.No we are not country foke by any means.We live in a huge city and we do live in the city.But yes it is common for racoons and possem's to hang around our back porch and garbage.Also we get to watch a rabbit eating or running across our front lawn.Last but not least it is not surprising to come across a SNAKE!!! Needless to say there is an abundance of small creatures sharing our property with us.Providing neverending entertainment for the children they leave the house in the morning with thier gear in toe magnifying glass,binoculars,flashlights,bug catcher nets and a plastic bug jar to store them in.Every couple steps around the entire outside of the house by mid-sping is usually cluttered with creatures.Creatures in bug jars,creatures in sand pails,creatures in empty food containers and of course mommy's tupperware bowls[mommy just buy's more].Sometimes we have a picnic in the woods and they really love that I pack a picnic basket and grab a blanket and they just love it.Sometimes we walk through the woods and look for dinosaur eggs[these are really large rocks,but Mikie truly believe's these are dinasaur eggs].Last year Mikie and I went walking in the woods and he found a dinasaur egg it was the size of my hand,we brought it home and wrapped it up in a towel and left it in the laundry room.I assumed that with in a week he would just forget all about it and I would get rid of it.Not the case! 2-3 times a week for at least 6 monthes he checked on it in the morning to see if it hatched yet and occationally he'd carry it around with him.He asked quite often when would it hatch.I told him it takes a long time for a dinosaur to hatch sometimes years.So he patiently waited .Some how during the course of the year the egg found a new home and that was on the kitchen counter on top of the microwave.One day I was at one of those educational type toy stores alone and I came across this thing.It was a crumbly sort of rock shaped like an egg and it had a dinosaur in the center of it with a pick.The idea was you had to help the baby dinosaur hatch from its egg.Of coure I immediatly bought it I was thrilled.I brought it home and that night when Mikie was sleeping I replaced the big rock we found in the woods with this new rock and just left it there for Mikie to discover.i think the next day he went to go check on his egg and he went nuts IT HATCHED! IT HATCHED! FINALLY HIS EGG HAD HATCHED he helped it out of the egg-rock and he had himself a tiny little plastic dinosaur.Well now he couldn't figure out what was wrong with it why wasn't it alive!So I told him a big long story of how silly he was dinasaurs didn't live anymore and went to the extreme of what would happen if they did live today I explained to him about fossils and that is actually what he had found he accepted it all and was happy again.It makes me so sad to think that someday my babies will be all grown up and have to live in the real world and not the fantasy one I try and provide them with.I love them so much .Sometimes I thing it's not possible to love this much .I love everything about them,the way thier lips move when they talk,the way they call my name,the way they interact with eachother even if it's a fight ,but I love the affection and love they show eachother the best.When one of them fall asleep and the other covers them ,When I see them walk by me holding hands or laying on the couch hugging and watching tv together.I don't think there is a better feeling in the world that I created this little network of love! well I guess I babbled long enough

Thursday, April 19, 2001 at 03:53 AM (CDT)

Mikie had a good day he is back to his old self he's not tired at all .He didn't even take a nap today.He's feeling great! It has been really cold here since easter.It went down to 30 tonight.So they have been playing inside all week

Tuesday, April 17, 2001 at 09:52 PM (CDT)

Mikie had a good .Me him and Samie went to the cancer clinic this morning.We had made Sophie and Erin Easter baskets and brought them to the clinic Dr. Mary loved this and we had a pleasant surprise because Erin was there so we were able to give her,her basket in person.The nurse took some blood from Mikie and we left Dr. Mary said she'd call us later and let me know what his counts were.I was sleeping however when she called and Kenny wrote them down.When I woke up and seen them I was so surprised that I thought they made a mistake and gave him someone else's his hemoglobin was 9.9 I don't remember it being that high since right after induction when he was completly chemo free for about 3 weeks.I can't figure out how it's so high when I have been complaining about how tired he's been all week, his wbc was 5.1 that's in the normal range.???? don't know what's going on but Dr.Mary said EXCELLANT!!! He did look gorgeous this morning however i mean more gorgeous than usual of course but his eye's weren't puffy like they usually are . He looked very well rested.Also his coloring was beautiful he looked so golden .What a difference a day makes.We didn't do much today.It was real windy and cold here today.We went to McDonalds and picked Chris up from her friends . She had a sleep over last night .Then we came home and Mikie really wanted to play in the sandbox.He kept going out there but coming right back in.Because it was too cold for him LOL He finally gave up and me and him took a long nap.He played with samie for a while after his nap and now he's on the couch watching cartoon network

Monday, April 16, 2001 at 09:37 PM (CDT)

Mikie had an absolutely wonderful day,it seems as though all his energy is back.I put the sad in the sandbox this morning and you had to see him he was having such a great time making sand castles.He would come in the house and say MOMMY COME SEE WHAT I MADE so I'd go out there with my eye's shut and say tell me when to open them tell me when.Then he'd tell me then I say Oh my god look at that.That is so nice and all that stuff you had to see him.He had a smile from ear to ear,he would get so excited he'd start clapping his hands and everything ad his whole body was just wiggling around with excitement.We did this about 3-4 times it was so precious.We filled up the pool today ad they played i that too It was just a really good day

Sunday, April 15, 2001 at 08:55 PM (CDT)

I'm hoping everybody had a happy Easter we did.We did! We started off the morning searching for baskets.Baby Kenny and Crystalynn were the first ones up .The baby found Samie's basket first and couldn't understand the concept that the basket full of candy was not his and that he had to look some more for his so his crying woke samie up!lol Then Mikie was the last one up.They sat around for a couple hours eating and getting there candy mixed up and then bickering over it for a couple hours.lol.I got them a new pool and some sand for the sandbox and shovels and pails and sifters and stuff and a bowling set.I thought we were going to get to use them today but it rained.So I taught them how to play the don't break the ice game I bought them Mikie liked it he even beat me the first game we played.Then they all took baths .Then we all went to grandma's until 8:30.Daddy had to get home to watch the soprano's!But mikie got really tired at about 7:30 and was laying in grandma's bed watching tv,He had been asking if we could go home for a while.He still very very tired all the time.He's consistantly been tired for at least a week.Then he started complaing that his feet hurt and wanted me to carry him around which I happily did.I hope he starts gaing some energy because before you know it he'll be back at the hospital for some more chemo.Well at least all that candy he had today gave him a little extra energy.After we came home he had some rice and gravy watched cartoons and fell asleep! That's how you spent your 4th Easter angel baby .Tired but happy!

Saturday, April 14, 2001 at 10:20 PM (CDT)

Hi mom! heard you got home safely! Hope to hear from you soon :0) My angel baby has been totally exhausted for days now.He tries to go out and play and run around with the other kids but he dosen't seem to have the energy for it.Poor guy!He has been sleeping more than usual.Hopefully all the candy that the easter bunny brings him will perk him up.It was a long weekend crystalynn had to friends and cousin lindsay sleep over last night.Lindsay left at about 7:00pm and the twins left at about 10:00pm.The kids colored Easter eggs with daddy yesterdat before the over night guests got here.They loved that and did a wonderful job.Hope everyone has a great Easter!!

Friday, April 13, 2001 at 05:10 AM (CDT)

Hi MOM, not much going on here,Mikie is doing good just the same old usual stuff he's really tired and his voice is going.He played out side on and off all day.He would play outside for a while then come in and rest an hour or two then go back out.It was really really hot today!

Wednesday, April 11, 2001 at 07:46 PM (CDT)

Hello mother,How are you? were all good.I'm trying to file the foundation for non-profit status.It's really complicated and difficult.But slowly but surely I'm doing it.It's like the ultimate challenge.I like it.Mikie is doing great!!! No problems what so ever he played in and out of the house all day.Him and Samie were squirting eachother with the hose all afternoon,it was very hot here again.Mikie was extremly agitated all morning.But by 1-2 o'clock was in really good spirits.

Tuesday, April 10, 2001 at 09:42 PM (CDT)

HELLO MOTHER WHERE EVER YOU ARE!
Mikie is doing good we went to the clinic for counts today he didn't need a trasfusion his RBC is hanging on at 8.3-8.5.He really is a crab apple lately.But I imagine I would be also spending day after day feeling exhausted.The mouth sore is gone.His appetite is fine.Even though he is exhausted he still running around and playing all day.It's really hot here,I think it was 88.

Tuesday, April 10, 2001 at 06:00 AM (CDT)

WOW I was so busy yesterday I forgot to add an entry lol,Mikie is feeling great.The mouth sore isen't bothering him at all,his energy level and appetite are fine.It is so hot here in the upper 80's all week.There are a couple concerns I have about Mike he is very moody.Things upset him easily and it's very common for him to cry and become extremly angry over very little things.The only thing I can think of is he must walk around feeling tired all day.I know I'm extremly cranky when I'm tired.Well I did some major hosehold chores yesterday washed walls,washed upstairs rugs,scrubed the entire upstair bathroom and probably 10-15 loads of laundry.I folded and put them away too :0) Also I went to the IRS and picked up the paper work to file the foundation for non-profit status

Sunday, April 08, 2001 at 08:49 PM (CDT)

Mikie is doing alright.The mouth sore got a little bigger but not much.It was bothering him alot this morning.We went to aunt renee's and uncle steve's there nieghborhood park was having a festival/easter egg hunt.He was real tired and kind of lethargic until he seen all the easter eggs then he just took off running and never stopped he hunted easter eggs,got a fake tatoo and played lots off games until he tired himself out then we went to aunt nae's and Mikie and Samie played super nintendo most off the day we had a cook out and Mikie and Samie played on the hommock for a while. It was a nice day .A bit hot in the upper 80's.

Saturday, April 07, 2001 at 07:28 PM (CDT)

Sorry about not updating we have been very very busy.We got home from the hospital Friday about 1 pm.Mikie did great he didn't even need the blood transfusion before we left.Ok here's a short biology lesson. Mikie is retieking.This means his bone marrow is filled with baby red blood cells.This is a real good thing.His red blood count is down real low and has been for the last week . It's necessary to transfuse at 8.0 He's been hovering between 8.2 - 8.6.This would explain the fatigue I've been mentioning.The reason Dr Mary did not transfuse him is because if she did his boe marrow would stop making all the baby cells and we don't want that to happen.After we came home from the hospital Mikie played in and out of the house with kenny and samie.Then Me,Mikie,Samie and Daddy went to the grand opening of the Evening Muse.This is the place where we are having the music benefit.It was great we met a lot of really nice people.Also I was able to talk about my favorite subjects all night long :0) lol Mikie and the foundation.This morning we got up early and went to the easter egg hunt/party at the hospital this was also great the kids had a lot of fun.They did arts-n-crafts,had there picture's taken with the easter bunny,played games,had there pictures drawn by caricature's and of course hunted Easter eggs.We also seen our friend.We seen SOPHIE[medullablastoma,brain tumor]She is adorable,she just turned 3.Her mom maria, her dad clint and baby brother cruz.Also our new friends Sarah[mom] and Erin [she relapsed last month from rabdyiomylosarcoma]She is 15 and hasn't been feeling to well so we were happy to see her out and about at the Easter party.Mikie has 1 mouth sore in the corner of his mouth but is not complaining about it causing any pain :0).He is very tired today but he has ran around and played all day and is wrestling around with his sister and brother as I write this .He did almost fall asleep in the shopping cart at the grocery store.So I took him home I don't want him over doing it.But he did not go to sleep he had raw carrots and a veggie dip w/some fried chicken and watched rugrats in paris.

Thursday, April 05, 2001 at 09:51 PM (CDT)

Hello ,I am very happy to report that mikie is doing great absolutly nothing to complain about.He is neutropenic,Dr Mary tried to make him wear a mask to the cafeteria.But he wasn't going for it.She also said she.s going to give him a transfusion of red blood cells because there down real low and expected to get lower.So Samie ,Daddy and baby kenny were here for a while today.Mikie always has a good time with Sam.

Thursday, April 05, 2001 at 03:56 AM (CDT)

WOW I just read yesterday's journal entry.I must of been a bit tired when I wrote it.It was very confusing.So all is calm here.Mikie is doing real good.No problems what so ever.Him and Samie played all day.He is learning how to play nintendo 64 He can move Mario around and jump on the enemies head.He impressed me.

Tuesday, April 03, 2001 at 09:46 PM (CDT)

Everything went well today.He slept through the spinal tab he was a little consious on her first attempt and I said I think he needs more so they gave him more .He woke up extremely angry and insisted on going back to his room this instant,screaming and yelling and all.Then when we got to the room he freaked out because he wanted Taco's instantly.I got a child life specialist to watch him while I ran down the street to get the Taco[in the rain]I ran into Dr Mary and Susan while I was there so they gave me a ride back.He did not like the taco's LOLHe said they don't taste like the ones you make and didn't eat any LoL .He watched some movie's played in the play room Oh yeah there is another picture of mikie posted on the internet I find the url for it tomarrow and leave it in tommarow's entry.For the impatuient people You can go to Mikie's foundation page the link is at the bottom of this one on the foundation page there is a link to Beanie baby heaven .Mikie is towards the bottom of there page.Also My shining star has his picture in the The Hemby's Childrens Hospital Brochure it is adorable.It's him and Dr Mary standing in front of the big fish tank watching the fish.Samie is sleeping here tonight with us they are a bundle of energy here at the hospital at 11 pm.Mikie just had an accident in his pants gotta go

Monday, April 02, 2001 at 08:45 PM (CDT)

Not much went on here today!Just getting ready to go to the hospital tommarow.Mikie felt great today.It was just a normal uneventful day today

Sunday, April 01, 2001 at 09:23 PM (CDT)

I wonder why nobody will leave me any comments on the new foundation page?Oh well There were some really heavy thunderstorms here today.Some grape size hail along with it.Mikie and Chris had the front door open and were standing in it amazed by the hail when suddenly there was a series of thunder.Mikie ran real fast into the kitchen.LOL It really scared him for a minute!Well unfortunatly we were suppose to attend a easter egg hunt today .But with the thunderstorm it wasn't possible .The kids [except Samie who acted as though life as we know it was ending lol but that's Samie for you]took it well.We have 2 more to go to next weekend.I'M HOPING MIKIE IS GONNA FEEL WELL ENOUGH.Since this week he'll be inpatient 4 days for chemo.But from past expieriance he should be fine.Chris and Mikie went over Uncle Steve's with daddy and to daddy's Basketball game and yes they have finally won. This game and last game :0).Uncle Steve gave Mikie a haircut.Well it was a very very very short fade.He fell asleep in the car on the way home so I haven't actually got a good look at him.Earlier today before they left he was looking extremly pale with really dark circles around his eye's .But Ken said his energy level seemed to be fine all day and also mikie bite his tongue pretty bad in 3 different spots roughousing with uncle steve,daddy, stevie.I hope it heals fast ! because next week his white cells are going to be non-existant :0(

Saturday, March 31, 2001 at 07:19 PM (CST)

Hello everyone!! I'm so excited.The foundation I was hoping to start .Is really starting.Things are starting to take off ,fundraiser's are forming,I've finished the foundation's web page,my phone book is starting to fill up with contacts.MIKIE IS FEELING GREAT!!!.When I first started this website just 2 months ago.Life was miserable for me.I was literally afaid to wake up in the morning because I didn't know what else was going to happen to us next.Now I literally can't wait to wake up to see what I could do next.I was so scared Mikie would be suffering major side effects by this point in his treatment.But so far it really has been fine.I'm a little nervous about him maybe getting mouth sore's this time around but I'm hoping he won't get them he'll be in the hospital April 3-7.He's been a little mean the last few days and tire's easier than usual .But he's eating and playing and just plowing right through this.YOU GO YOU STRONG BOY !!!Your almost done with the tough stuff.Yesterday Me,Mikie and baby Kenny walked to the grocery store and brought their wagon along with us.No COMMENT!It was a beuatiful day in the 70's.But the street we had to walk down, speed limit was 45 and there were all kinds of 18 wheelers zipping by.It was very nerve wracking.Today we didn't do anything Mikie played with his brother and sister.I guess they were making a rock collection.They were running around outside with there umbrella's up .No it was not raining.I seen them down in the creek and jumping on the trampolene.Mikie was exhausted after all that he took a bath and took a nice long nap and then woke up starving.He requested rice and gravy.He got rice and gravy.OK EVERYONE GO CHECK OUT THE NEW WEBSITE .....INTRODUCING.....THEEEE....MIKIE SPERO FOUNDATION the link is at the bottom of this page UNDER LINKS please leave any suggestions ,idea's or feedback in the guestbook on that page.I'm really dying for some feedback on it GO GO NOW!!! LOL

Thursday, March 29, 2001 at 08:55 PM (CST)

Today was an interesting day to say the least! Me,Mikie and Ken[daddy] were on our way to a restaurant to have lunch with a music producer who is organizing the music for our upcoming fundraiser and the car died out on us.Did I forget to mention it poured out all day ? well finally Daddy stood out in the rain long enough to hail down a cab and off to the restaurant we went.Unfortunatly we were 45 minute's late.Bruce left us a little note about how he waited but needed to get back to work.I was so disapointed that I couldn't keep from crying right at the restaurant! I've been working so hard on fundraising so I could get the foundation going.I feel so passionatly about helping the children and there families.I finally felt like I was making some serious progress ! Only to miss the appointment! oh well we'll have to try again i two weeks .Mikie will be in the hospital for treatment next week.I don't leave ever for any reason! So what started off as a bad day didn't end so badly.We had lunch at a 50's style restuarant,then went to Zainy Brainy's,it's a really big toy store.Then we went to Barnes and Noble [my favorite place to go] and grocery shopping and then finally after PaPa was finished working he came to get us.So Mikie had a nice day he enjoyed being out as long as he's happy then so am I.The vincristine he got teusday dosen't seem to be bothering him either he's been sleeping fine .If he gets through tonight and tomarrow night we should be in the clear

Wednesday, March 28, 2001 at 08:25 PM (CST)

Oh it was a really beautiful day today.We went to the clinic today to bring free passes for a Charlotte Hornets game.I thought some of the children may enjoy going.I had a nice little visit with Mikie and I favorite nurse Susan.Then Me,Mikie,Samie and baby Kenny went for a walk in the wagon we seen Houston and his mom and visited with them for a while.Mikie seems to be doing just fine he's a little ball of energy!!! But he looks awful,actually he looks exhausted.ALL DONE WITH THE STEROIDS!!!! YEEAAH

Tuesday, March 27, 2001 at 10:10 PM (CST)

Hi , we went to the clinic today.Everythig went fine as usual.We were in and out ,We didn't stay long enough to get the CBC back after he got the vincristine we stayed 15 minutes to make sure he didn't have a reaction to it.So there was just enough time for a pokemon puzzle,then we went to a chinese buffet restaurant.We had some really interesting conversations,he's so adorable.He's still doing pretty good.He is just really tired,pale and has dark circle's around his eye's

Monday, March 26, 2001 at 07:41 PM (CST)

Today was a nice boring day! after our morning fight to get the medicine down the rest off the day went great.Mikie is having gravy cravings lol.He says can I eat something with gravy on it.So he's been having french fries and gravy,mash potatoes and gravy and rice and gravy.he was really even tempered today he didn't have any steroid fits he played with his brother and sister all day in and out of the house

Monday, March 26, 2001 at 09:08 AM (CST)

Sorry for not updating yesterday I was exhausted last night.We were all out of the house by 6:30 am yesterday and Me, Mikie and Crystalynn weren't home until 10:00pm.Me,Mikie and Chris went to the flea Market .ADVICE.Do not try shopping with a child on steroids.Poor guy is extremely moody! He is not a very happy little person.Side effects of steroids.Oh well he's done with them tommarrow and will be back to his happy,easy-going and loving self in a week or two.He had some pretty amazing fits at that flea market and it's very hard to get him to take the medicine at all.He fights hard!He hates it!Well daddy went golfing[Uncle Steve's treat thanks Uncle steve daddy needed that}Says he almost got a hole in one on a par 3 .mmmmmm doonn'tt know ?Samie and baby Kenny stayed with Aunt Reene,Stevie and Lindsay.Samie was very happy that she didn't have to share her cousin Lindsay with Crystalynn.After that we were all at Uncle Steve's and Aunt Reene's.The kids played then all the kids went to daddy's basketball game with him when they came back we ordered some pizza's and the kids watched Willie Wonka and the Chocolate Factory.We got home at about 8;30 pm.Then Me Mikie and Crystalynn went grocery shopping everyone else fell asleep,we didn't get home til around 10:00pm .We were exhausted.Besides for the mood swings Mikie had a pretty good day

Monday, March 26, 2001 at 06:13 AM (CST)

Sorry I didn't update yesterday everything is fine we were all just very busy yesterday.We were out of the house by 6:30 am.Me Mikie and Crystalynn went to the flea market.Did we have a good time you ask?Let's just say that you should never take a child on steroids shopping lol.Well we didn't have a bad time.1st Mikie wanted a robot.So I bought him the robot,10 minutes later he decided he didn't want the robot,he wanted some hunting kit thing so we went back and bought that.I told him we'll just give baby kenny the robot instead.Then 10 minutes later he didn't want the hunting set anymore now he wanted a different robot.I tried to explain to him that I could not afford all that stuff and that he couldn't have it.He through a fit ,he started screaming and yelling and threw the hunting stuff on the floor and started jumping on it.Well my eyes nearly popped out of my head.My son does not act like that ever,I've never seen it,usually he just says "ok mommy"So needless to say the steroids are working!We ended up taking the 1st robot back and trading it for the one he wanted now. They were the same price,so this satisfied him for a while.But then he started crying for some airplane an hour later.I told him forget it enough is enough .He threw a fit ,but did not get his way.poor guy !!! He's done with the steroids tommarrow!! so he should be a much happier person!!!He hate's taking it it's a huge fight.While we were there daddy was playing golf[uncle steve treated him thanks uncle steve daddy needed that]Samie and baby kenny were with aunt renee.Samie was happy she finally had her cousin lindsay to herself.After the flea market and golf we all stayed at uncle steve's.The kids played then all went to daddy's basketball game then came back and we had pizza and the kids watched willie wonka and the chocolate factory.Then we went home.We got there at about 8:30 pm.Me, mikie and crystalynn the went grocery shoping.Needless to say we were EXAUSTED when we got home.

Saturday, March 24, 2001 at 10:12 PM (CST)

Today was a good day for Mike ,it was really nice out he played out side alot.We had a really hard time giving Mikie his medicine today .That dexamethesone is like doing a shot of yukon jack it is really nasty.He only has 3 more days to go.Then he's done with it for a while.I tricked him into taking it this morning[poor little guy]I told him it was just ice tea in the syringe and he believed me.Needless to say he was surprised once it was in his mouth.But he swallowed it .Tonight there was a big fight.him and his dad were wrestling around and Ken was trying to hold his hands down and all kinds of crazy stuff.Mikie was crying and he's becoming quite the con-artist he was saying "please daddy I don't like it I'll be your best friend"what a heartbreaker ,So ken ended up sneaking it in to when Mike opened his mouth to scream and cry ken stuck it far back and squeezed real quick.Poor baby almost threw up but ended up swallowing all his medicine.He also colored to pictures for his chemo angel[he calls her his angel]He says my angel sent it.were going to send her some stuff probably monday.Everybody wish me and ken luck getting Mikie to take his medicine tommarow WE NEED IT!!!!

Friday, March 23, 2001 at 07:53 PM (CST)

Mikie had a really good day,he also had a good night,he seemed to be comforatable throughout the night ,but he woke up a few times and had troble falling back to sleep so he just watched his toon disney.I asked him if he was ok and does anything hurt so many times that he ended up getting aggravated with me.He kept insisting he was fine.To say Mikie is a bit short tempered is an understatement.steroids? He went to his grandma's day care center today .I was scared to let him go but Crystalynn and Samie wanted to go and once Mikie found out they were going he wanted to go to.So I called the docter and he said as of teusday he wasn't neutropenic and that it should be fine.Just keep him away from any visibly snotty nosed children .Luckily there weren't any there so he got to stay.After that he came home ad played outside a while.It was a beautiful day out and right now him and Samie are up playing.There pretending like beanie babies are pokemon characters and saying all kind of strange pokemon things lol

Thursday, March 22, 2001 at 08:40 PM (CST)

Mikie had a tough night last night he couldn't sleep comforatably . He kept waking up crying and kicking his feet.Finally at about 5:00 am. I figured out his feet were bothering him because of the vincristine.DUH So I decided to rub his feet and calves , I found a huge knot in his calf muscle and rubbed it out.Then he was fine.I hate that vincristine! oh well at least I will know what to do from now on.Finally it stopped raining here so he got to go out and play it was a beautiful day .He was a little nasty early on[steroids]but pretty much enjoyed his day .He took his medicine like a champ. GOOD JOB BUDDY!!!

Wednesday, March 21, 2001 at 08:44 PM (CST)

Mikie says Happy birthday grandma Rosie and thank you for the song you left amanda me and my mom think your a sweetheart and we can't wait to see you.Mikie was doing fine today.It was a boring day it raied again here.He had to take a bunch of nasty medicine today.Dexamethesone,6mp and septra.Mikie hates taking medicine.poor guy so this will ot be a favorite week of his because he has lots to take.Another 2 days we'll see what the vincristine has in store for him the full side effects of chemo don't come out until 3-4 days later?

Tuesday, March 20, 2001 at 08:21 PM (CST)

Everything went fine today we went to the clinic and we were i and out Dr. Mary is on vacation this week and there was a Dr here from Duke he was a very nice man.So they took some blood and gave him the vincristine ad we played a game of pokemon memory and left .We didn't even have to wait for his results to come back .I made nurse Susan promise me she call if he was neutropenic and we did't get a call so.His voice is still horse but he seems fine .It rained all day today .So he just watched toon disney and toy story 2 .Oh yeah Mikie recieved a card and a 2$ bill the other day and loved it .he put the money in and out of his pocket a thousand times .It was cute! He also recieved his 1st check for his fund it was for $40 and it was sent to our house?Don't know why . So me and him went to the bank and deposited $42 .But I still let him keep his $2 bill and put the $2 in myself.If anyone has mailed Mikie a card,surprise or money.I thank you very much.The high point of his day is going to the mailbox and just getting any mail is exciting to him.a little boy colored a Scooby doo picture for him and sent that and he loved it.So thank you for making my baby a reason to smile

Monday, March 19, 2001 at 09:38 PM (CST)

amazing everytime I add a log journal entry something goes wrong.Oh well his voice is still horse,He still only has 1 mouth sore ad he had some diarhea. He was a little more tired than usual,so he took a nice long nap today.He did however have fun playing outside today with his brother and sister.It was a beautiful day mid-70's.He picked me a bunch of dandilion's today and gave them to me 1 at a time for a kiss MY SWEET BOY. He was so proud of himself and the flowers.LOL

Monday, March 19, 2001 at 07:32 PM (CST)

Well today was a good day.mikie's voice is real horse still but of course my angel is not complaining.He thankfully did ot break out with anymore mouth sores .It's just the one ad it dosen't seem to be giving him much troble and I'm contemplating on telling a story .It may be one of those only a mother could love thing but I thought it was very smart and adorable of him.He woke up this morning and used the bathroom 3 times in 10 minutes and then said with a big smile on his face ."Wow poop,poop,poop.Whenever I go to the docters then I have to poop all the time Back and forth [to the bathroom] back and forth.I was so shocked that he was able to put the chemo and the diahrea together.He's so smart!!! Well I'm real nervous tommarow he goes to the clinic and gets a shot of Vincristine[chemo]It's the worst it makes you have all kind of odd sensations in your body and just makes you feel icky . In extreme situation It can temporarily to permanantly damage you neurologically.It's just scary to think about . I HATE VINCRISTINE!!!!!!.But needless to say Mikie had a good time playing today with his brother and sister .It was a really beautiful day out today .Like mid-70's.The kids have this new thing going on Samie tied the wagon to her bike with a string and she pulls either Mikie or kenny up and down the driveway.Oh yeah my sweet little angel brought me a dandoline today with a big smile on his face{ so proud of himself].I said THANK YOU and gave him a big kiss.So then he started bringing them in one by one for the next 1/2 hour he was collecting those kisses.I LOVED IT.He's so precious

Sunday, March 18, 2001 at 08:07 PM (CST)

CAN YOU SAY MOUTH SORES ? yes it's true he has one luckily it's only one though and it dosen't seem to bother him niether does his throat even though it sounds even worse than yesterday.But needless to say he's still running around playing .he went to daddies basketball game.Which were not going to talk about winning or losing anymore. LOL It was a beautiful day here in north carolina the weather has been great.

Saturday, March 17, 2001 at 09:33 PM (CST)

Besides for his voice being extremly raspy mikie seems to be doing fine.Things irratate him a bit more than usual but his energy level,appettite and appearence all seem fine.He says his throat dosen't hurt very much ,just when he coughs or clears his throat,He's not complaining though.he's still up he's watching a new movie." The Littlest Vampire"

Friday, March 16, 2001 at 08:24 PM (CST)

Mikie had a really good day today,his voice is horse again like last time .His throat must be raw but he is not complaining.he slept really good last night about 13 hours so his energy level seemed fine today.His appetite was fine.He played with his brother and sister today even did a little jumping on the trampolene.He recieved 3 cards in the mail today.He was so excited.

Thursday, March 15, 2001 at 08:36 PM (CST)

Well were home we left the hospital at around 1:00pm.Mikie was so happy to have the IV removed.He jumps up and down on the bed and runs through the hospital halls. Poor guy.He was also pushing his beanie baby bear around in a wheel chair. Needless to say he was very happy to be home he just played with his brother and sister all day then fell asleep at around 8:00

Thursday, March 15, 2001 at 12:31 AM (CST)

I am happy to report Mikie is still feeling good.He did tons and tons of puzzles,went down to the cafeteria, went outside for a while on the deck,played in the playroom most of the day.We will be going home sometime tomarrow.

Wednesday, March 14, 2001 at 08:59 AM (CST)

really strange only half of the journal entry showed up for today.Hmmm not sure why ?Oh well here's the rest after he said. YOU MADE THE RIGHT CHOICE MOMMY he said THE EARTH IS ROUND LOl HE'S so funny and boy was I glad I made the right choice.Well I posted a topic on my message bored the link is at the bottom of this page.Bengamin's mom replied and believe it or not I couldn't figure out how to reply back to her ON MY OWN MESSAGE BOARD. oh well I was just going to say thank you for the reply.It helped all I wanted to know was does it happen to everyone or some people or was it my imagination or own insecurities So thanks Bejamin's mom.Also anyone stopping by should sign the guest book so me and mikie have something to read later on .It gets a little boring here.Thanks Aunt Di for signing it and I love use both too.oh yeah click on history for the rest of todays journal entry

Wednesday, March 14, 2001 at 12:37 AM (CST)

yesterday was a good day.No complaints.Mikie seemed to be feeling fine all day.A little diarhea but nothing we couldn't deal with.Mikie watched tv most of the day.We made the dinosaur out of the kit susan gave us,He played with his sticker/stamp set for a while.This is what he said to me . He picked up a stamp of a circle and said MOM DO YOU KNOW WHAT PLANET THIS IS? I said EARTH? He says [laughing] YOU MADE THE RIGHT CHOICE

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Tuesday, March 13, 2001 at 06:35 AM (CST)

Hi ,Mikie is still sleeping so I snuck out to write this.Yesterday was alright I guess there are no major complaints.Mikie was excited about going to the hospital ,because as soon as he woke up I told him about all the fun things I was bringing to the hospital for us to do.The room they gave us this time is great.It is huge it has a couch, 2 recliners, a gliding rocking chair and a little kitvhen table it is huge.We love it.The procedure went well Mikie basically slept through the whole Spinal tap.For witch I am very grateful.For some reason the anastegiologist would not let mikie leave the intensive care unit until 300 pm even though he woke up and was up and around at 1:00.Mikie hates it in there I tried to make it as pleasent as possible for him but he just was not happy and asked every 5 minutes or so can we go back to our room now?We made a volcano in there I brought him his sticker bug book in there and we were making animals out of boloons,I brought him nacho's and cheese and coke,All this thing would distract him briefly but he still kept asking if he could go to his room now.Oh well.After we finally got to leave there Mikie did some eating ,watching tv , playroom, and we went downstairs to the cafeteria.They started the infusion of chemo at around 6:00 pm everything went great He had to take a potassium pill before hand.That he did not have a problem with and I was told it wasn't anything to worry about.But be sure I will ask docter mary a thousand quetions about it as soon as I see her.Oh the nurse Susan from the clinic who also works at the hospital took care of mikie from the time we came in until he was sleeping in PICU [pediatric intensive care unit].So she called our room at about 4:00 yesterday from her home just to see how he was doing and said she'll be back in the morning to check on him. Also she's bringing him some dinasaur bone making kit.How wonderful is she? You don't run into many people as kind as her in a life time and I am very grateful to have her care for my son.Well we got to sleep at around 10:00.Not to bad all and all it was a pretty good first day. All his blood counts were down a little low at our arrival wbc was 2.4 he was not neutropenic,his platlets were normal and his hemoglobin was 9.6.So I am expecting for all his cells to be wiped out for a brief period of time this time around.

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Saturday, March 10, 2001 at 07:30 PM (CST)

Hi today was another good day for mike .He's feeling fine.He had fun today him,kenny and samie were playing ring around the rosie on the trampolene and running around playig outside.

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Saturday, March 10, 2001 at 07:30 PM (CST)

Hi today was another good day for mike .He's feeling fine.He had fun today him,kenny and samie were playing ring around the rosie on the trampolene and running around playig outside.

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Friday, March 09, 2001 at 09:20 PM (CST)

I am so so sorry,I wrote down the wrong address to see Mikie's picture.The correct address is www.themiraclekids.com.Mikie had a good day .We didn't do much.Just grocery shopping,yard work chasing the rabbit out of our neighbors yard.LOL thats a daily occurance unfortunatly the neighbor dosen't find it as funny as we do.I'm going to have to buy a lock for the cage.Because the baby keeps letting it out.nothing is planned for tommarow,sunday is cousin stevie's b-day and monday the hospital.I will still be reading and writing e-mail and updating this site daily while were at the hospital

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Thursday, March 08, 2001 at 10:50 PM (CST)

Me and Mikie had a good day today he has a little bit of a runny nose but seems fine.Mikie has found 2 treasures today.He has a diary with lock and key and a gold pocket watch these thing are sleeping with him as I speak.LOl Now here is some really exciting news Mikie's picture is up at www.miraclekids.com hurry go see how gorgeous my baby is.The picture I sent was not blurry at all .But turned up a bit fuzzy on the net. I'll let everyone go see bye

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Wednesday, March 07, 2001 at 08:27 PM (CST)

today was a good day .Very uneventful.All I have is a cute,quick story to share.Me and Mikie were looking at Harley Davidson motercycles on the internet today and he said 'when I grow up I'm going to get one of those' I said really Mike? he scrunched his face up like he was in deep thought and said "I got to get some work" lol He cracks me up!

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Wednesday, March 07, 2001 at 07:00 PM (CST)

Hi today was a good day ,it was uneventful.Just a really cute,quick story I want to share wiyh you all.Today me and Mikie were looking at Harley Davidson motercycles on the internet and he said " Whe I grow up I'm going to buy myself one of those! I said" really mike" and he said[faced all scrunched up like he was in deep thought]'yea I gotta find some work"LOL he cracks me up

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Tuesday, March 06, 2001 at 08:15 PM (CST)

The docter appointment went well today I let kenny come and he was a good boy.He was holding Mikie's hand when the nurse accessed his port.There was another little boy there today his name was Ben and he's the same age as mikie ,We watched a rugrat video and did some puzzles with Ben.We seen Ms. Francis at the clinic,she's the child life specialist at the hospital.She asked when our next stay was and I told her Monday.She said they'll have a birthday party for him then and that she has all the stuff for a dinosaur party Mikie had a big smile on his face.His counts were down lower than lasts week I thought they were on there way up but I guess not.Dr. Mary says this is a good thing it means the treatment is working.Oh well

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Monday, March 05, 2001 at 02:10 PM (CST)

Not a lot went on today we did a lot of errand running today.Me and Mikie went to FIRST UNION BANK today and opened up a donation fund for him.There was a play room there him and Kenny had fun they were bowling.Then we went to the post office and mailed out a surprise for Hunter from the hugs and hope club.Mikie liked doing this first I read Hunters story to him from the hugs and hope page .Of corse I shortened it and didn't make it sound as horrible as it is.I just said the little boy has cancer like you and gets chemo like you .Mikie was just smiling .Then I told him about all the Things that Hunter likes ,Mikie got giggly over that because he liked some of the same things he did.Then we wrote him a cheerful letter and included a belated valentines day card from Samie and Mikie drew him a porcupine.This was cute when I was putting the stuff in the envelope baby kenny was trying to open the box of space stickers and stamps that we got for Hunter and I said "no no kenny this is for a little boy who is sick like mikie.He has to go to the hospital too.Then Mikie said "Boy I sure hope the people send me some of those cause I'm sick too" LOL He is funny little does he know that mommy bought him some, but is saving them for the hospital. LOL We also mailed out pictures to 3 different websites that requested them.So soon everybody will be able to see how adorable my baby is. I CAN'T WAIT.I sent them to The Miracle Kids ,a new one called Children's Cancer Crusaders or CCC and cyberport.com/beanie's E-mail me if anyone needs the address to ant of those sites.Well after that we went to the mall to pay some bills and mikie tricked me into going to the huge candy store there.AMAZED ME that a little boy who just turned 4 could navigate himself all the way across the mall and downstairs to the candy store that he's only been to maybe 3 times and the last time he was there was 3 months ago!LOL Candy must not be an easy thing for him to forget?LOL!!!
and thats it then we came home and just took it easy .He's feeling fine and doing great .He goes to the clinic tommarrow and his hospital stay for chemo treatment is exactly one week away.I HATE THIS!! It's like the parties almost over

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Sunday, March 04, 2001 at 08:44 PM (CST)

Today we all went to watch daddy and uncle steve play basketball.They are now officially the worst team in the league.Poor daddy.All the kids have no interest in watching the game they just want to buy things from the vending machine and play with thier cousins .So we all had fun today.I got a great deal on pokemon tapes today at the flea market .I got them for $2.50 each brand new they were still wrapped in plastic it was great these go for $10 at walmart so I got 1 of each [6] so after the game mikie and samie watched pokemon all night.Mikie was feeling fine and doing great .

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Saturday, March 03, 2001 at 06:41 PM (CST)

Not a whole lot went on today,Mikie is feeling fine and doing great. Has everyone heard of the hugs and hope club?This is a wonderful website .It was started by a wonderful lady .The idea behind it is to have people send children that are either seriuosly ill or terminally ill a little surprise or card or something in the mail.Wouldn't you like to make a sick kid smile? The url is www.geocities.com/mmellow1/hopemar.htm . If this sounds like something you'd be interested in please also check the month of february for a little boy named Hunter who is seriously ill and only recieved 1 card

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Friday, March 02, 2001 at 10:11 PM (CST)

I made a mistake yesterday Mikie will be in the hospital march 12-16 for treatment.Not a lot went on today Mikie is still feeling great.Today they had a beanie baby fest.Mikie and samie were playing with all there beanie babies today.I even got the one's down off the shelf and opened up the teenie's out of there bags they ripped all the tags off of them but they had fun and thats all that matters Mikie's favorite beanie baby is kicks.thats the green one with the soccer ball on it.Marsha from hugs and hope sent him some books in the mail today he loved them and was very excited to recieve mail.THANK YOU MARSHA FOR MAKInG MY BABY SMILE!!! and I hope everyone that is reading this visits the hugs and hope club website the url is www.geocities.com/mmellow1/hopemar.com and if you can there is a little boy named hunter that was featured there in february and he is having a really rough time.He only recieved 1 card .Poor little guy.KEEP SIGNING THE GUESTBOOK ME AND MIKIE LOVE IT

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Thursday, March 01, 2001 at 09:58 PM (CST)

Me and Mikie are so excited more people singed the guest book in one day than in the entire month we've had the website.Thank You.There's not much to tell today just a bunch of the same ,playing outside watching toon disney.He's feeling fine and doing great just as I suspected he would until next treatment march 15 -19.

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Wednesday, February 28, 2001 at 07:43 PM (CST)

Hi today was a great day for Mikie .Me and him made a cake this morning.He did a lot of playing outside today this was cute- Baby Kenny[he's 2} was in the front seat of the car at the wheel pretending to drive and mikie was seatbelted in the back seat.They are so cute.Mikie was scooting around on crystalynn's scooter most of the day.Now there playing that crystalynn is the hunter and mikie is a wolf,samie is a bull.What imaginations.PLEASE PLEASE PLEASE SIGN THE GUESTBOOK even if you just sign your name.That would make me and mikie so excited.I'd also like to know how you heard about his site.I miss out on a lot asleep staying awake when everyone is sleeping.I spend 4-5 hours a day looking for sites that will link our site to thiers and all this is for some encouraging messages left in the guest book that I could read to my son.SO PLEASE SIGN THE GUEST BOOK.maybe I'll start sleeping more.LOL that's doubtful.

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Tuesday, February 27, 2001 at 08:45 PM (CST)

Hi today was a good day we went to the clinic it was a short visit with the best oncology docter and nurse there is.The clinic is really nice it's brand new the dedication ceremony was on feb 4,2001.They have it set up like a house/clinic.When you first walk in it's like a livig room couch ,chairs,end tables,coffee table,ottoman.the whole clinic is in bright colors lots of red,yellow,green blue.There's a playroom to the left,lots of games puzzles ,tv,vcr,tables chairs,super nintendo.to the right is a big open window type thing with the receptionist,then a few feet away is a door there are about 3 examing rooms on the right each one decorated in a different theme,and a big room with games and tv,vcr and big comfy chairs that you can hang IV bags from.This is where the children get there infusions when necessary.on the left there's a kitchen it has everything but a stove,including food and drinks the rest is shaped in a square form and there's Dr.Mary's office ,two more examing rooms and another office.But the way it looks is definatly not the best part of the clinic .The best part of the clinic are the people there,Dr.Mary and Nurse Susan are amazing .A trip to the clinic is like visiting some relatives.They come out play with mikie ,hold him, kiss him ,hug him.Then we wieghed him.Then we went in doctor Mary's office so she could show Mikie some pictures of her dogs she just brought in.Then we went to the kitchen I had some coffee .Then in a examing room.Dr mary was going over the rest of the cosolodation period with me we got off scheduale last treatment because her father died so now were going in for next treatment on monday march 12th.We breifly looked over the next stage in the protocal it dosen't look to badIn the mean time Nurse Susan has mike on the table,blood pressure,temperature,tickling and playing.Then she accessed his port .I held his hand .He didn't cry or anything.She took some blood and off to the kitchen we went with docter mary.Mikie searches the refridgerater and cuboards everytime we visit.Then to the playroom we did a pokemon puzzle and then it was time to go .Mikie's counts were pretty good.We didn't get the difs.But dr mary said he shouldn't be neutropenic.If he is it'll be above 750 and on it's way up.His platlets were 196,000 thats normal , but still down from what his count usually is 390,000 or higher.His hemoglobin was 9.6.Which isen't that bad normal for his age is between12-14.But you don't need a transfusion unless it's 8.0 or lower and his WBC was 2.4 which is low.But not that low.It also is on it's way up so Mikie should do wonderful until march 12,.After we came home he watched tv,played outside for a while then fell asleep at 6:00 and is still sleeping now .

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Monday, February 26, 2001 at 07:19 PM (CST)

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Monday, February 26, 2001 at 06:44 PM (CST)

Mike is still a little more tired than usual but he was so happy today.This morning he was singing and dancing with a veggie tale video,him ,his father and brother jumped on the trampoline for a while and they let the rabbit out of the cage and chased him around for a while.So I'd say he had a good day .Tommarrow we go to the clinic and have him and his blood count checked out.He seems fine so I'm thinking they should turn out ok.He may need some red blood cells though.Also baby kenny is sick again,severe diarehea and throwing up.Let's hope mikie does not catch this from him.

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Sunday, February 25, 2001 at 09:32 PM (CST)

Mikie had his ups and downs today he's usually very happy throughout the day .But he is a little more tired than usual so he's a bit more crabbier than usual.His appetite is down a bit but he still has one.He had a full day today he went to watch his daddy and his uncle steve play basketball,they are on a team.Then they spent the rest of the day at uncle steve's.so it was a good day for him .Mikie says daddy isen't a good basketball player and that he didn't make any baskets.But when he grows up he is going to play basketball and win his daddy a trophy.HE"S SO SWEET

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Saturday, February 24, 2001 at 06:38 PM (CST)

Wow I just sat here for 20 minutes writing a nice long journal entry for my love.And then goodbye AAAAAHHHHHHY I was kicked off line and lost it all AAAAAAHHHHHGgGGHHH.Ok now I am better .My angel is tired,has diarhea.his skin is icky feeling he likes to run around in underwear because his skin is so sensitive and food tastes funny to him we were told way back in the begining of this horror story that a side effect was that food would have a nasty mettalic taste to it So these are the ways my love is suffering with out one single complaint.He tries to bear it all on his own.He is and always will be the most amazing 4 year old in the world.I am in awe of you my love and I will never be more proud of an individual in my whole entire life.

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Friday, February 23, 2001 at 07:10 PM (CST)

Today was just pretty much of the same.He's pale and has circle around his eye's.He hasen't looked like this in a really long time.It's kinda scary to see him like this but he's still really active,has a good appetite and is in good spirit's so I guess I could't ask for more.

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Friday, February 23, 2001 at 05:55 AM (CST)

Mike did pretty well yesterday. I called the docter ad asked if his voice being horse was a side effect of the chemo.She said his throat is raw .So I asked him if his throat hurt and he said only when I do this[he swallowed]but it dosen't hurt when I drink.I said why didn't you tell me your throat hurt?he said I don't know and changed the subject.He so amazing.Such an angel.I couldn't have asked for a better kid.He was a little more tired and weak than usual.But nothing to complain about.He did play on and off through out the day.

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Thursday, February 22, 2001 at 01:49 AM (CST)

Strange,the last joural entry I wrote isn't here.Oh well it didn't say much just that we returned home yesterday in the am just like I thought we would.Mikie is doing good.He's feeling a little weak and tired today but is very good spirits and did some playing today.He looks really pale.But I guess thats normal under the circumstances.His voice sounds strange like he's losing it.I'll have to call the docter and find out why this would be happening.Well NO MOUTH SORES.that is something to be extremely greatful for

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Tuesday, February 20, 2001 at 03:19 AM (CST)

It was a pretty good day.No side effects this time I think he may escape without the mouth sores.His iv line backed up today for no reason.So they had to change the needle in his port.With no emla,Mikie was upset for quite some time.but he bounced back quickly.My little superman.Dr. Mary repeatedly keeps suggesting that when this is all over I need to go back to school and become a nurse.I wonder what she see's that I don't.Most likly we will be going home today in the am.

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Sunday, February 18, 2001 at 10:54 PM (CST)

WOW Mikie is doing great,nothing like the last time he was here .He is having absolutely no side effects yet.This is wonderful.They had started by know last treatment .Hopefully this means he'll either have none or they'll be very mild.We played games all day and did puzzles and made pizza.Mikie had a reAlly good appetite today.Keep you fingers crossed that tomarrows news is good news.

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Sunday, February 18, 2001 at 03:39 AM (CST)

yesterday went pretty well Mikie got up around 8:00am We got ready ,went to the hospital.They didn't do the inthathecal proceedure until 2:00.So that was rough.He couldn't eat because he recieves a concious sedation.So he was starving.He has to lay on his back flat,afterwards to prevent a headache.But he started screaming and crying because he wanted to go back to his room and eat.So they let him leave the picu after 20 min.Once he at he was happy again .but boy did he eat.he had taco's,a bunch of grapes,kitkat bar and a box of animal crackers.we went to the playroom and made a friend nathen.He watched a pokemon movie with him they also plyed with playdough.So it was a good day.I'm hjust hoping for no side effects this time around.please no mouth sores

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Friday, February 16, 2001 at 08:56 PM (CST)

I had a very busy day today getting ready for our 4-5 day hopital visit had to pack all mikie's favorite toys,foods and cloths up today pluspack for everyone else.Mikie wants his brother to come sleep over with him at the hospital.So baby kenny is going to come sleep there sunday with us.THis will definatly be one to remember.I hope he's not to crazy.Samie came and spent the night last time and that was nice.But there's a big difference between being 2 and 5.Can't wait to see the way this turns out.Well wish him luck.

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Thursday, February 15, 2001 at 06:23 PM (CST)

Mikie felt real good today.Him and the baby fought a lot today though.I had a stressful day.They also asked for food all day then wouldn't eat any of it.Not fun.But always happy when they are.I wish I had the guestbook signed by someone.It would be nice to communicate with someone and it would be nice to show mikie that people do care.Well I joined a pediatric cancer support group.I guess I forced myself in though.It is the only one in charlotte.It's for patients of carolina's medical center.Mikie is a patient of presbyterion hospital.But I called and asked the social worker there if I could come to there's . She said yes.Maybe I'll gain some expieriance and start one for our hospital.We'll see bye

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Wednesday, February 14, 2001 at 05:48 PM (CST)

today was a good day mike felt fine very uneventful.me and mikie made chocolete ice cream.it came out excellant.Happy valentine's day.daddy went to school and surprised samie today,he had lunch with her and brought her a special valentine cupcake.she was very happy.til tommarow

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Tuesday, February 13, 2001 at 08:27 PM (CST)

another good day

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Monday, February 12, 2001 at 06:55 PM (CST)

not a whole went on today .mikie felt great.

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Sunday, February 11, 2001 at 05:01 PM (CST)

another good day.Did some kite flying and not much more

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Saturday, February 10, 2001 at 07:33 PM (CST)

wow I could definatly get used to this I'm very happy to report another good day.We did some sping cleaning around here today.Because we are having a yard sale tomarrow.The kids have been bugging me to have one for sometime.I'm happy to get rid of some of this stuff anyways.It was a beautiful day out today.Mikie played outside most of the day.He rode his motorcycle for a while and just played,played,played with his brother and sister.Also I feeling in very good spirits today it seems as though my dad is not going to live in that home much longer my uncle has agreed to sign his power of attorney over to my brother and my dad is going to live with my brother's girlfriend.Christine,she's such a sweet girl.I love you christine thank you so much,now maybe I can sleep again.til tomarrow

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Saturday, February 10, 2001 at 02:10 AM (CST)

yesterday was a wonderful day.Mikie played outside most of the day.He was jumping on the trampoline for a while and chasing our pet rabbit around for a while.I hope he has many more days like this.Everything almost felt normal

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Friday, February 09, 2001 at 07:06 AM (CST)

Yesterday was another good day .We went to the clinic we were in and out for a change it was nice.Mikie is amazing he was so good.He doesn't complain or cry or anything .He just smiles at everyone.He didn't even cry or make a sound when they accessed his port.He just scrunched his face up for a second when the nurse put the needle in.His blood counts came back real good everything is pretty much in the normal range.hemoglobin was 10.,platlets were 396,000 and his wbc was 4.2.Dr Mary moved our hospital stay from next thursday to next saturday.Because her father died and his funeral will be next wensday and thursday.I'm so dissapointed that nobody signs the guest book.It would be so nice if there were some entries there.I feel so alone all the time.We have no family or friends here and there aren't any support groups here in charlotte for families dealing with pediatric cancer.As soon as we get our lives back together I'm going to start a candlelighter's chapter here.So nobody has to ever feel so desparete and alone as we do.I already started looking into it.Mikie's web page will soon be added to THE MIRACLE KIDS webpage.AS soon as I send them a picture via snail mail it will be up.The url is www.themiraclekids.com.Also Mikie is going to be featured in the month of march on the hope and hugs website.So we have somethings to look foward to .Well I'll update tonight to let you all know how today goes

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Wednesday, February 07, 2001 at 07:56 PM (CST)

What can I say not much.The day went just like we like it to .Boring and uneventful.Tommarow Mike has a clinic appointment.It should be a very short visit.

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Tuesday, February 06, 2001 at 08:46 PM (CST)

today was a wonderfully uneventful day. mikie is doing great.Everyone is feeling fine.we cut mikie's hair today it looks nice it has thinned out considerably but he is not bald nor does he have bald spots.His hair was just uneven from long hairs that never fell out and short hairs that are growing in so we evened it out.I overheard him telling his sister that daddy shaved his hair and mama cut it and now he has "a cool boy haircut".He seems very happy about his haircut and just in general.I am very thankful for this.

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Tuesday, February 06, 2001 at 02:39 AM (CST)

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Monday, February 05, 2001 at 07:07 PM (CST)

Very uneventful day.Mikie is feeling fine and doing great.He tried riding his new big boy bike he got yesterday .But was to scared that he would fall off.So he quit.Oh well.

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All in all he had a wonderful three weeks I was so happy for him.

Then of course disater strikes.It started off with Mikie's 2nd hospital stay.The spinal tap went really well.He slept throughout the entire procedure.His chemo was delayed until the following day because his ph level wasn't were it needed to be to start chemo.3rd day there he broke out in a mysterious rash that went as fast as it came .4th day there he was nauseous,but zofran[anti-nausea medicine]quickly took care of this . The rash came back,it was all over his stomach[we've still never figured out what this is.He also had a little blister in the corner of his mouth [the start of mucositis].He still had the rash and the mouth sores were worse the next day when we went home.My poor baby could barely eat,drink or talk for the next 5 days.The day after we came home from the hospital we lost our only source of income.My husband was told they were going to have to let him go because they needed someone who was going to be at work every day and felt as though he was missing to much work.This was a total surprise ,he had missed about 10 days total in the last 2 1/2 months since Mikie's diagnosis.He was never giving a warning nor had anyone even voiced there concern to him about taking off to much work.Actually they acted totally supportive and then BBAAMMM your fired.Well,he called the labor bored and was told that since he hadn't worked there for a year there was nothing they could do.He worked there for 10 1/2 months,so with that in mind they obviosly got rid of him now so they wouldn't get stuck with him in another month and a half.HOW CAN PEOPLE BE SO CRUEL? Everbody in the house then came down with the stomach flu the baby had it the worst.Mikie fortunutly wasn't neutropenic and handled it very well.We had a cake on his birthdate Feb. 1st .We recovered from the flu and had a party at grandma's yesterday.It was great Me and Mike ordered a dinosaur cake and it looked really nice.We had a dinosaur pinata.He got a new big boy bike{training wheels instead of tricycle].A remote control snake.An army tank.Some jurasic park dinosaurs and action figures and some hunting cloths.Apparently he wants to be a hunter when he grows up.I don't know were this came from since me nor his father even know anyone that hunts.Oh well to each his own.The day would have been perfect if I hadn't recieved news that my poor dad was going to be put in a home for the disabled the next day,his biggest fear.This is heartbreaking and also long and complicated.So in short ,my dad lives 700 miles away from me in buffalo.He has had Multiple Sclerosis for 28 years now.Since he was 23.6 months after he was diagnosed he was unable to do anything for himself.My brother informed me last week that my dads family told him they planned to put him in a home,but not for a while.Apparantly taking advantage of my unfortunate situation knowing I have other thing on my mind and probably do not have the time,or energy to fight this.SO now I'll just carry the guilt around of failing my father.I hope he knows how much I love him .But what can I do? I have no money ,I can't really leave NC. to go to NY.right now because of Mikie.I feel like such a failure he deserves so much better.Well at this point I'm getting scared to wake up in the morning !WHAT COULD POSSIBLY HAPPEN NEXT ?.

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Saturday, February 03, 2001 at 05:27 PM (CST)

MICHEAL'S DIAGNOSIS

Micheal's diagnosis was a complete surprise.He woke up sat.NOV 18,2000 with back pain.At first I thought it was an attempt to get some extra attention.But quickly changed my mind it became apparent that mikie was in severe pain .He laid flat on his back , hands to his sides,starring strait up to the cieling.Initially I called the docter's office and reported ,that I believed my 3 year old ,had some sort of back injury,perhaps from wrestling with his siblings.When I approached him to take him to the docters he was shaking in fear at the thought of being moved.I called the docter's office back ond reported this to them.I was told that it is not normal for a three year old to act in this manner and to call an ambulance.I did.The perimedic's advised me to give him some motrin,and told me they believed he was over reacting and that docter's always advise people to call an ambulance so they are not held accountable if anything should go wrong.At first I put up a fight,I knew in my heart something was wrong ,he was pale,had circle's around his eye's,hadn't moved at all in over 3 hrs and kept dozing in and out of sleep even though he just finished sleeping for about 13 hrs.Eventually I allowed them to convince me that I was over reacting and that they were sure he was fine.I gave him the motrin and he slept on and off throughout the day.Finally,later in the evening he just sundenly got up and walked to the bathroom,and excitedly announced to everbody"look I can walk now".He was fin for a while,he went shopping and to his Uncle Tim's house with his dad,came home and played and wrestled with his dad and siblings,Kenny 2,Samie 5,and Crystalynn 11.Me and Mikie fell asleep on the couch and at 5:30 am he woke up in pain again,I immediatly gave him more motrin and he fell right back to sleep.

DIAGNOSIS DAY

November 19,2000 Mikie woke up with no pain and acted completly normal.So much so that I decided he must of pulled a mucle or something because he was fine and had no intentions of taking him to the docter's.BUT his sister Samie woke up with an earache,so I called and made an appointment for her and figured it couldn't hurt to make one for him and bring him along so I did.We arrived at the office and the docter said Samie had an ear infection.Kenny had a severe cough and then she examined Mikie thouroly.She said his liver and spleen felt enlarged.She then said that he had some bruising that concerned her and that she would like to run a blood test to check for mono.WOW how niave was I ? I was clueless.She came back and told me my son was anemic.I was relieved! I said'that just means he needs more iron right?She looked at me as though she was perplexed and said his platlets were down below normal also and wbc was higher that normal.Still this meant nothing to me.Then she said" to be perfectly honest with you mrs.Spero I believe your son has Leukemia.Well I lost it.After much crying and confusion me and my children ended up meeting my husband at the emergency room of Presbyterion Hospital.I don't barely remember driving my three babies there in the snow.I only remember that I was lost and didn't know were the hospital was.I was driving around,crying looking for a police car so I could ask them were the hospital was and all of a sudden I just happened upon the hospital.

They were waiting for us on the second floor ,they had a room ready for him,Uncle Tim took the other children to grandma and grandpa.Me and Daddy stayed.The terror started immediatly.The Docter[pediactric oncologist Mary Lacaze] came in almost immediatly and checked micheal over,she said she did not appreciate the pediatricion's finding that his spleen and liver was enlarged,but wouldn't be able to tell us anything until they tested some of his blood.So off to the treatmentroom we went to start a IV in his right wrist and take some blood out of a vien in his arm.They missed the first time and had to try again.This was horrible.Well later on Dr.Mary came to talk to us and mikie stayed with Uncle steve.She said that there were no leukemic blasts in his blood stream,but was pretty sure he had it and was going to do a spinal tap and bone marrow aspiration the next morning.4:00 am SURPRISE the nurses are in our room waking up my son and drawing blood from another vien.We were informed that the docter had ordered a blood draw every 6 hrs.My son was screaming why are they doing this to me .I will never forget this.I had to pretend like I locked the door and wasn't going to let the nurses in anymore tonight just to get him calmed down and back to sleep.


Morning comes and Mikie goes to PICU for the spinal tap and aspiration I spend most of the time locked in the bathroom,lights off,crying on the floor.Finally Dr. Mary comes to talk to us she says Mikie is still sleeping and that the spinal and aspiration tests would be back soon and told us about all the other sophisticated DNA tests that were being done and wouldn't be back for days.She also informed us that of Micheal's last blood test 10 am this morning that leukemic cells did show up in those tests and she could now confirm he had it.She said that tommarow he would have surgery to have a port-a-cath put in his chest and she was going to put some chemo in his central nevous system via spinal tap to prevent it from spreading there.Also that he would be starting his 28 day induction period tommarow night.He was put on protocal 9905 this wasdexamethasone [steroid]everyday for 28 days,an IV push of Vincristine[chemo]once a week for 28 days.ASparaginese{chemo] a shot to his thigh muscle every 3 days for 28 day and on day 1 and 8 a shot of methetrexate[chemo]in his spine to prevent it from spreading to his central nervous system. He would already be starting chemo.


Micheal had to sit around and wait the entire day without one thing to eat or drink since the night before .They were unable to preform the surgery until 4:00 pm.Due to an emergency.So he goes down to surgery.I return to the bathroom floor.Finally we are called and told he's in recovery,unfortunatly nobody told us were.So we wandered the surgery hallway's[I don't even think we were suppose to be back there]looking for some one to help us.Finally a nurse comes out a surgery room door,We ask for her help in finding our son.She starts checking around after about the 4th door we here him screaming on the top of his lungs DAAADDDYYY,DDDDAAADDDY between sobs we run in.My son is in a metal crib 2 sizes to small for him a million wires hooked to hin lips and mouth bone dry,a big bandage across hir right breast and one across his lower back .He was screaming crying hysterically "you left me daddy you left me,you promised me daddy you promised you'd never leave me.THere are no words to disribe the pain here we could not touch him he was begging for us to pick him up nand begging for some water ,we could not give him any I really don't know how we managed to live through these last three days with our minds .

We remained in the hospital for the next twelve days.This was extremly hard on our other children.They stayed with grandma.But were not used to being away from there parents except for a few hours.I guess Mikie did fairly well the rest of our stay he had a little problem at first with high blood pressure,but they were able to control it with medication. He was officially diagnosed with Low Risk Acute Lymphoblastic Leukemia Pre B Cell.We were told he would be in treatment for the next three years. He did however refuse to take any oral medications this soon became a nightmare.We could not get him to swallow one drop of oral medication nor could the staff. unfortunatly he was on three different medications all hours of the day and night and he never got a rest from the battling of the medications he was recieving dexamethasone[very terible tasting steroid that results in some nasty side effects]once in the morning,once at night.Septra once in the morning ,once at night.High blood pressure medicine every 6 hrs.plus some extra since anytime they tried to give him any medicine he would get so upset that his blood pressure would shoot up sky high and he'd have to take more high blood pressure medicine.Also he had many trasfusions of red blood cells and platlets and had to be medicated with benedryl and tylenol beforehand we found this out after he had an allergic reaction to a transfusion of platlets and broke out in itching hives from head to toe in a matter of 5 minutes.The last week in the hospital Mikie was secluded to his room because he was neutropenic his anc was only 100-200 for about 2 1/2 weeks

He went home neutropenic,with a sick brother and sister and two panic stricken parents because off this.Fortunatly Mikie never caught anything from them.First two weeks at home he was extremely nasty,he would scream and yell that the slightest noise was bothering him,he bit his brother he didn't want anyone but me near him,he never left the couch and was hungry morning, noon and night.He even bit his brother,punched his father,and gained a whole bunch of wieghtin three weeks.I felt as though I lost my baby.He no longer looked or acted anything like himself all in a matter of three weeks.It was sad,but even though he changed he was still the love of my life.We had to go back to the hospital at least once a week for a transfusion and chemo Mikie became very sullen he would not talk or even look at anyone until we were back in the car on the way home .Oh yeah since I mentioned car ten days after we came home from the hopital the trans mission went on our only car when I was attempting to drive Samie to kindergarden because the bus drove right by our house. He was so scared he'd have to stay there again.I'd say the last week of induction we'd started to see him improve he started to leave the couch and play with the other kids we even went to the mall,to see Santa,to the movies,and out to eat.Finally induction was over and it was time to seesee if he was in remission or not.A couple days before christmas we got our best christmas ever.Mikie hada bone marrow aspiration and had O% leukemic blasts in his bone marrow and his CBC was wonderful everything was in a normal range.We had a wonderful Christmas and News years and the next couple of weeks were glorious.Mikie was right back to his old self now that he was off the steroids.He was extremly energetic and played long and hard day and night I was so happy for him it was obvious that he fell wonderful.

After induction comes consolidation this next stage of treatment lasts for 5 months.What this entails is a three day hospital stay every three weeks .The stay starts off with a shot of methetrexsate to his spine[spinal tap every three weeks]then a 24 hour in fusion of high dose methetrexate.42 hours after the start of the infusion it is neccesary for him to take 3 doses of leucovorin[rescue drug]every 6 hours.week 8 and 17 he's back on the dexamethasone.Week 8,9,17,and 18 an IV push of vincristine.6mp[chemo in a pill form]everyday for the entire 5 months.His first hospital stay was January 4th first we went to the clinic were docter mary informed me that she would do the spinal
tap there.What this consists of actually is that he recieves 10 mg of methetrexate to his spinal fluid.Before she can inject the 10 mg she must drain an equal amount of spinal fluid out to prevent him from getting severe migraine headache's it also neccesary for him to lie down flat and be still for a half hour after the procedure.She starts the conversation off with"you never want to give a child sedation unless it's absolutely neccesary,because there always is a risk involved.She has preformed many of these precedures on children as young as Mikie and they are able to tolerate this well".I'm just staring at her like she's crazy.But said"ok".This was horrible.It was me,Mikie,Dr.Mary and 2 nurses in the room.Dr.mary is on one side of the table ,Mikie is on the table with his back facing her,and me and the 2 nurses are on the other side of the table facing Mikie's face.The 2 nurses attempt too scrunch my 30 lb son up in a fetal position and hold him still so Dr.Mary could stick a neddle in his spine and leave it there for approximatly 10 minutes while the spinal fluid drips out drip by drip to equal 10 mg, and he can not move at all ,the nurses have to restrain him the whole time or his spinal cord could be damaged.YEAH RIGHT!!!!!HELLO.Dr.Mary couldn't even get the needle in his back he immediatly became hysterical and tensed his body up even though he couldn't move,and he's screaming crying mommy,mommy please don't let her hurt me please.She stops trying and says that she thinks I should leave the room ,sometimes children overreact when a parent is in the room because there reaching out for them .Know I'm really looking at her like she's crazy.Her and the 2 nurses are just staring at me and she says hurry up go now don't even say bye.AAAAHHYHHHH.I go.I'm out there ear against the door crying maybe for 2 minutes total.Mike was in there screaming hysterically " MOMMY,MOMMY I WANT MY MOMMY"and the door opens ,out comes Dr.Mary and she says I,m not going to do it here without sedation.He's obviously being tramatized and since it has to be done so often I'm not going to do it without sedation from now on.PHEW WELL THANK YOU.SO off to PICU we go everthing went well he was sleeping threw the whole thing .THe rest of the stay was pretty uneventful he tolerated his first infusion of methetrexate well.We went home after a 4 day stay the next three weeks were great.He felt great.We went to the park a few times,we bought fishing poles and attempted to fish,we went to the movie,mall,he slept over Aunt Nae's and Uncle Steve's,we went out to eat.We rode his new power wheels motercycle up and down the block almost everyday.We went to play at houston's house[a little boy who lives down the street] a couple of times

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