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Micheal's Fight: A Child Deals With Life-Threatening Illness   Deana Spero

Following is a portion of the journal about Micheal Spero, a 4-year-old boy, facing Leukemia. It is written by his mother, Deana Spero. These entries have  has been adapted for the Life Challenges Web site. To read the journal in its entirety and to remain updated on Micheal's progress, go here.

Saturday, February 03, 2001 at 05:27 PM (CST)
This journal is to keep people updated about our child and to keep a detailed journal for Micheal to read when he becomes interested in knowing what a truly amazing person he is. This is for you, Mikie. Never waste a minute of your life, never doubt yourself, and know that you can do anything.

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 when it became apparent that Mikie was in severe pain. He lay flat on his back, hands to his sides, staring straight up to the ceiling. Initially, I called the doctor'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 doctors, he shook in fear at the thought of being moved. I called the doctor's office back and 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 paramedic's advised me to give him some Motrin, and told me they believed he was over reacting and that doctor'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. 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....

November 19,2000 - Diagnosis Day
Mikie woke up with no pain and acted completely normal. I had no intentions of taking him to the doctor's. But his sister Sammie 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 doctor said Sammie had an ear infection. Kenny, Mikie’s brother, had a severe cough. Then she examined Mikie thoroughly. She said his liver and spleen felt enlarged. She also said that he had some bruising that concerned her and that she would like to run a blood test to check for mononucleosis. Wow! How naive 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 platelets were down below normal and the white blood count 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, my children and I ended up meeting my husband at the emergency room of Presbyterian Hospital. I 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 where the hospital was. All of a sudden, I just happened upon it.

The hospital staff were waiting for us on the second floor and had a room ready for Mikie. The terror started immediately. The Doctor [pediatric oncologist Mary Lacaze] came in almost immediately and checked Micheal over. She said she wouldn't be able to tell us anything until they tested some of his blood. So off to the treatment room we went to start a IV in his right wrist and take some blood out of a vein in his arm. They missed the first time and had to try again. This was horrible. 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. She told us she was going to do a spinal tap and bone marrow aspiration the next morning. At 4:00 am, Surprise! The nurses were in our room waking up my son and drawing blood from another vein. We were informed that the doctor had ordered a blood draw every 6 hours. My son was screaming, "Why are they doing this to me?" I will never forget this. I had to pretend that I locked the door and wasn't going to let the nurses in anymore that night just to get him calmed down and back to sleep.

Morning came and Mikie went to PICU for the spinal tap and aspiration I spent most of the time locked in the bathroom, lights off, crying on the floor. Finally Dr. Mary came. She said Mikie was still sleeping and that the spinal and aspiration tests would be back soon. She also told us about all the other sophisticated DNA tests that were being done, which wouldn't be back for days. She informed us that, in Micheal's last blood test at 10 a.m this morning, leukemic cells did show, and she could now confirm he had it. She said that tomorrow he would have surgery to have a port-a-cath put in his chest and that she was going to put some chemotherapy in his central nervous system via spinal tap to prevent it from spreading there. He would start his 28 day induction period the next night and already start chemo.

Micheal had to sit around and wait the entire day without one thing to eat or drink since the night before. The doctor was unable to perform the surgery until 4:00 p.m. due to an emergency. When he went down to surgery, I returned to the bathroom floor. Finally we were called and told he was in recovery. Unfortunately nobody told us where. We wandered the surgery hallway's, and finally a nurse came out from a surgery room door. We asked for her help in finding our son. She started checking around.

fter about the 4th door we heard him screaming on the top of his lungs, "DAAADDDYYY,DDDDAAADDDY." Between sobs, we ran in. My son was in a metal crib 2 sizes to small for him with a million wires hooked to his lips and his mouth bone dry, a big bandage across his right breast and one across his lower back. He was screaming hysterically, "You left me, daddy. You left me. You promised me you'd never leave me." There are no words to describe the pain. Here we could not touch him even though he was begging for us to pick him up. He was begging for some water and we could not give him any. I really don't know how we managed to live through these last three days with our minds intact.

We remained in the hospital for the next twelve days. This was extremely hard on our other children. They stayed with grandma, but were not used to being away from their 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 the hospital was able to control it with medication. Mikie 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...

After his initial treatment, he went home...and I felt as though I lost my baby. He no longer looked or acted anything like himself. 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.

Ten days after we came home from the hospital the transmission went on our only car.

Finally, induction was over, and it was time to see if he was in remission or not. A couple days before Christmas we got our best Christmas ever. Mikie had a bone marrow aspiration and had O% leukemic blasts in his bone marrow. His CBC was wonderful. Everything was in a normal range. We had a wonderful Christmas and News Year’s celebration, 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 extremely energetic and played long and hard day and night I was so happy for him. It was obvious that he felt wonderful.

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

A very uneventful day. Mikie is feeling fine and doing great. He tried riding the new big boy bike he got yesterday, but was tot scared that he would fall off. So he quit. Oh well. All in all, he had a wonderful three weeks I was so happy for him.

Then of course, disaster strikes. It started off with Mike'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. On the third day there, he broke out in a mysterious rash that went as fast as it came. On the fourth day, he was nauseous, but loran[anti-nausea medicine] quickly took care of this. The rash came back 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 his company was 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 too much work. This was a total surprise. He had missed about 10 days total in the 2 1/2 months since Mike's diagnosis. He was never giving a warning nor had anyone even voiced their concern to him about taking off too much work. Actually, they acted totally supportive and then BAAMMM your fired. My husband called the labor board and was told that since he hadn't worked at the company for a year, there was nothing they could do. He worked there for 10 1/2 months....HOW CAN PEOPLE BE SO CRUEL?

Everybody in the house then came down with the stomach flu. The baby had it the worst. Mikie fortunately handled it very well. We had a cake on his birthday, Feb. 1st. We recovered from the flu and had a party at grandma's yesterday. It was great. Mike and I ordered a dinosaur cake, and it looked really nice. We had a dinosaur piñata. Mike got a new big boy bike [training wheels instead of tricycle], a remote control snake, an army tank, some Jurassic Park dinosaurs and action figures and some hunting clothes. Apparently, he wants to be a hunter when he grows up. I don't know where this came from since neither his father or I even know anyone that hunts. Oh well, to each his own. The day would have been perfect if I hadn't received news that my poor dad was going to be put in a home for the disabled the next day—his  biggest fear. WHAT COULD POSSIBLY HAPPEN NEXT?

Sunday, February 18, 2001 at 03:39 AM (CST)
Yesterday went pretty well. Mikie got up around 8:00 a.m. We got ready and went to the hospital. They didn't do the treatment until 2:00, so that was rough. He couldn't eat because he received a conscious sedation, so he was starving. He had 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 pediatric ICU after 20 minutes. Once he was back in his room, he was happy again. Boy, did he eat! He had taco's, a bunch of grapes, a Kitkat bar and a box of animal crackers. We went to the playroom and made a friend of a boy named Nathan. They watched a Pokemon movie together and played with playdough. So it was a good Saturday.

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 have started the last treatment by now. 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.

February 24, 2001 at 06:38 PM (CST)
My angel is tired and has diarrhea. 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 beginning of this horror story that a side effect was that food would have a nasty metallic 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. I'm just hoping for no side effects this time around. Please, no mouth sores.

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 seriously 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 received 1 card.

Monday, March 05, 2001 at 02:10 PM (CST) Not a lot went on today. We did a lot of errand running today. Mikie and I went to FIRST UNION BANK today and opened up a donation fund for him. There was a play room there. He 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 Hunter’s story to him from the hugs and hope page. Of course, 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 Hunter did. We wrote him a cheerful letter and included a belated Valentines day card from Sammie. Mikie drew him a porcupine.

A cute thing happened 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 because I'm sick too" He is funny. Little does Mikie know that mommy bought him some, but is saving them for the hospital. After that we went to the mall to pay some bills and Mikie tricked me into going to the huge candy store there. It 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. The last time he was there was 3 months ago! Candy must not be an easy thing for him to forget!!!

Mikie goes to the clinic tomorrow and his hospital stay for chemo treatment is exacly one week away. I HATE THIS!! It's like the parties almost over.

Wednesday, March 07, 2001 at 07:00 PM (CST)
Just a really cute, quick story I want to share with you all. Today, Mikie and I were looking at Harley Davidson motorcycles on the Internet and he said,  "When 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], "Yeah, I gotta find some work."

Tuesday, March 13, 2001 at 06:35 AM (CST)
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 kitchen table. We love it.

The procedure went well. Mikie basically slept through the whole spinal tap for which I am very grateful....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]. She then 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 a dinosaur 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. All in all, it was a pretty good first day.

To read the continuing story of Micheal and the Spero family, go here.

If you'd like to make a donation to the Micheal Spero Leukemia Fund, make checks payable to the Micheal Spero Leukemia Fund, c/o First Union, Albermarle Road, NC1304, Charlotte, NC 28227  In addition, if you order products online from the companies listed at the following link, the company you order from will send the Spero family a percentage of the cost. www.michaelspero.efunddrive.com  The Spero's have also created a discussion group for the parents of children with pediatric cancer, which can be accessed at www.emessageforum.com/forum.asp?id=8634. To contact Deana Spero directly, e-mail her at: deeken25@aol.com

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