Hi, I'm Tom, (mikesdad1)
My son Michael was diagnosed with A.M.L (acute myelogenous leukemia) in March of 1996. After several relapses he had a bonemarrow transplant in August 1997. He is now doing fine. I would like to use this page to share my sons and my experiences with other parents and children who are or have had similar experiences. I am a single father with custody of Michael and would like to hear from other single custodial parents too.
It began on March 27, 1996....My son Michael, who at the time was an active and very intelligent 5 year old, appeared to have a simple case of the flu. I treated my son as any parent would if their child had the flu. After a few days, he was not getting any better. At this point I was getting very concerned. His temp was steadily rising, 101 one day, 102 the next day and so on. His temp would not respond to any fever reducing medication. After already missing several days of work to be with him at home, (the sitter wouldn't watch him while he had a fever)I figured I would see what the doctor would suggest on getting his temp to come down. I called the doctor and told him about the temp and a few other odd things I had noticed, like little red dots forming on his face and underarms, and the fact that he was a little more pale then what you would think is normal for a child with the flu. The doctor sounded concerned and told me to meet him at the hospital. After administering a spinal tap and a series of test, they came to me with the worst news any parent could hear when you thought that your child only had the flu, "YOUR SON HAS ACUTE MYELOGENOUS LEUKEMIA!" My little boy, the most considerate, polite, and caring child I have ever met was about to face the fight of his life....
Shortly after I was told the news, without even being able to see my son, they took him to a hospital 2 1/2 hours away. That had to be the longest 2 1/2 hour ride of my life. At the time we needed to be together the most, we were separated by miles on a dark road at 11pm. I will never forget the feeling of helplessness. I missed my son so bad at that point, I didn't know if I would ever see him again....
When I finally arrived at the hospital, I was a complete mess. I had to fill out paperwork for admission and tests, and at the same time I didn't know what room my little boy was in and how he was doing...All they would tell me was he was there. Finally, after finishing all the paperwork, they took me to the room that Michael was in....I will never forget the look on his face, total confusion and fear...They already had him in a plastic tent with tubes up his nose. They already gave him another spinaltap and what they called a bonemarrow test(I know what they are now, but back then it was new to me.). A bonemarrow test is when they insert a needle into the pelvis and extract bonemarrow.This test is very painful. The first night was a very hard night.
After spending the night just looking at my boy laying on that bed under that tent, I kept thinking that we might never have the opportunity to go to the park, to watch Bill Nye the science guy (that was Michael's and my favorite show to watch together), to sit up late and watch movies or do the things that we liked to do together so much. The doctors weren't very optimistic and didn't give me much to hope for...
The first visit from one of the doctors at this new hospital came shortly after 7:00am. I had a million questions and tried to ask them all at once. The doctor told me that there will be a time for that later but for now he wanted to tell me what it was that Michael had. He sat me down and told me it was A.M.L(Acute Myelogenous Leukemia),I didn't know that there was so many different forms of Leukemia. He explained that childhood Leukemia is known as A.L.L(Acute Lymphnotic Leukemia) and infact Mikes form was very rare in childen,the average age for A.M.L is 67 years of age. He went on to tell me that the chances of Michael recovering from this depended on what form of A.M.L he had...That brought up more questions,"how many forms of A.M.L are there"? He went on to explain that there are 7 different types of A.M.L and it will take several hours to determine what type Mike had..Six of them are very similar and one is very different, very hard to treat and very dangerous but he assured me that the chances of Mike having that particular one is slim. After he left the room, I was in a daze, my mind was spinning and my emotions were going wild. I looked down at my son and he seemed to be resting comfortably. Now it was time to wait..
The hours took like what seemed days. All I could do was sit and think. They had Michael on meds that made him sleep, so he slept a good part of the fist day. Finally the doctor came back in the room with a blank expression on his face. "It turns out that Michael has the rare form and we need to do more test to determine what protocol of chemotherapy to give him" and before I had a chance to even think, he left the room. I didn't know what to think or do, so I left the room to find his doctor before he had a chance to disappear. After finding the doctor, and pleading my case for more information, he took me into a private room to answer some of my questions. The first question I asked him was what was the chances of Mike recovering, his reply was not what I expected.... "Well, we have another problem, not only does Michael have the rare form of A.M.L but he also has R.S.V( a nasty upper respiratory infection)wich creates a problem in treating him with chemotherapy at this point. We must first treat the R.S.V and hope we could clear it up before he gets any worse." Then I asked the question again," What are Michael's chances." His reply "10% to 15% depending on how long it takes to clear up the R.S.V." 10 to 15 percent! That was a shot to the heart..Thats when I realized how bad this really was..
They soon started to work on this R.S.V problem and seemed to get it under control after about a week. Then they started the chemo,a protocol was handed to me and explaind.The way they made it sound was that they thought it would work. After two weeks of receiving this protocol of chemo,they took another bonemarrow test and gave me the news I couldn't wait to hear, "Michael is in remission." The joy I felt at that time is unexplainable, my son was given a second chance....
The stay at the hospital for the following week was comfotable,Mike and I played a lot of Nintendo and ran around like nuts. Things were looking up. Then I noticed on this protocol that they had given me, Mike should've started his next round of chemo. I brought this up to his doctor, and he told me that they had to wait for Mikes platelets to rise to 75,000 before they can start again. It sounded good to me so Mike and I just continued playing around and making the best out of a bad situation...A few day after, we received a copy of his blood counts. I noticed that lately the doctors weren't seeing Mike as often and I took it as a good sign. On his blood couts,his platelets where 125,000, but still no chemo.This made me concerned again, so I asked why. The answer that I got infuriated me,"WE DON'T KNOW"....That was it, they avoided me like the plague from then on. I had a relay bad feeling after that but didn't know enough about chemotherapy to figure it out...Shortly after that they took him off all of his meds and told me that there was nothing more that they could do for my son.... The fear had returnd,the confusion was back, My son is going to die.....
After we left that hospital to go home to let my son die, I received a phone call from my father in Florida,"I found a hospital down here that can help Michael." GREAT!!!!! Only three hours after getting that call, Mike and I were on our way to ALL CHILDREN'S HOSPITAL in ST Petersburg Fla....Being that we lived in Pennsylvania, this was going to be a very long ride..
The ride was very long, I constantly asked Mike how he was feeling, I think I drove him nuts, he would yell "I FEEL GOOD".There's nothing more annoying to a child than a paranoid parent. He was a very calm passenger for the 20 hour ride, a lot more calm than his much older dad.
When we arrived at the hospital, they were much more attentive to him and myself,imedeatly starting the tests they needed to figure out where to start with him...After the test were complete, they told me he had relapsed do to an error in chemo treatments...I knew they had something to hide up in the hospital in Pa...It turns out that they gave Mike the protocol for A. L. L. instead of the one for A.M.L....I know they knew that wile I was still in that hospital..So I asked them if there was something that they could do for Mike...They said it will be a bit harder being that he had relapsed, but they thought that he was in better shape than normal being that most relapses do make things more difficult in treating Leukemia...Needless to say you all know how I felt about that hospital in Pa...I would like to get the word out about that place some day..
In this new hospital, the rooms were all twice the size of the ones in Pa. The hospital staff were more professional, and strait forward, I think that's what you need in a situation like this.... They started on a A.M.L protocol and with only slight problems, like low platelet counts and red blood counts, within 1 month he was back in remission... Things continued to go well for several months, I had thought the worst was over....Michael would get a few fevers that would land him in the hospital but nothing to bad...By October of 96, we were on our way back to Pa.. After we returned, Mike was able to go to school and try to live like a normal kid, and he did so until April of 97.
I came home from work and was getting ready to eat dinner when I received the call," We found a problem with Michael's blood counts", I knew then that we had a very bad problem...Once again he had relapsed, but this time I knew it was going to be the hardest time yet....I called All Children's hospital to see what they wanted me to do "you have 48 hours to get him here".
The ride down this time was a little more somber, my thoughts were more bleak and morbid...Before we left Florida the last time they said if he were to relapse again, they wouldn't be able to do much for him...Well that time was here and it was time to face the hard reality of death....I tried to talk to Michael about death on our way down to Fla. but it just didn't seem rite to talk to a 6 year old about something that he shouldn't have to worry about for at least another 60 years...
When we arrived there, they didn't seem to optimistic. They said that his chances have dropped considerably because of the relapse and the most they could do was to give him up to 5 months with the rite kind of chemo treatments. My worst fear was all but confirmed on that day. Convinced the battle was lost, I tried to prepare myself and my only child for his upcoming doom, but Mike wasn't about to hear that, "things will be all right Dad" he would say. I wished I could believe him at that point but the doctors opinions overshadowed my sons feelings...
After the chemo started, and we were settled into the hospital life again, one of Mike's three doctors approached me with a possibility that wasn't there at the begining.."We think with the rite chemo , a very aggressive protocol, he might have a chance with a bonemarrow transplant." That sounded great to me..After asking about his chances again, they said without it he has no chance but with it, he has a 20% chance..After a few hours of thinking I opted for the chance...The only reason I had to think about it at all was because of the dangers involved with the pre transplant chemo.
Knowing the dangers of this pre transplant chemo, I kept an eye out for any info that I could get my hands on...They don't let you get to much info to protect yourself from overreacting...Well me on the other hand was crafty, I made friends with everybody and wound up with all the info I needed...A bonemarrow transplant is a very dangerous procedure, there's a lot of risks in pre transplant, the transplant itself, and post transplant..The one concerning me at this point was the pre...This one certain chemo Mike was going to get was called Cytoxin, a very aggressive one with many nasty side effects. Michael wound up breezing through it without one...The next chemo was A.T.G, another bad one with equal amounts of just as dangerous side effects as the cytoxin, again, Mike went through it with none...At this point, I started to think either they weren't working, or my son was superboy...After the worst of the chemos were finished, they started on the ones that I was already familiar with. Things seemed to be going smooth, but yet we had not found a donor. Time was going by and in April, they gave Mike 5 months, and here it was August... I got tested but was only a 4 of 6 match. They needed a 5 of 6 or better for him to have much of a chance.
I had just about given up hope when the doctor came to me with the great news that they had found a donor..She was a 20 year old collage student and in good health..They said she was leaving for school and we needed to set a date immediately for the transplant. That was music to my ears. The date was set for August 15.1997.
The day of the transplant had finally arived..It would not take place until 10:00pm, so we had a whole day to prepare...Mike was not at all worried, But you know me, by now I was a nervous wreck....Mike and I spent the most part of the day watching TV and playing more Nintendo,( If I never play Nintendo again, it would be to soon)..The day for me drug on. We tried to keep our minds off of it, but it just kept playing and playing, anticipation was the enemy... Finally, the bonemarrow had arrived was able to hold the bags of life witch was donated to my son by a complete stranger, It was weird, In these two bags, there was bonemarrow from another person, going to be put into my sons body to give him another chance at life....The transplant began and I was able to be in the room wile they were putting the bonemarrow into Mike...It is done by IV..Mike had a broviak, which is like a catheter inserted into his chest strait to his heart...The heart acts like a pump distributing the bonemarrow. The first concern was that his body would reject the bonemarrow... Wile he was getting it they watched and nothing happened...His body was taking it well. The transplant took about four hours and went well... The next concern was the bonemarrow rejecting his body which is called Graft VS Host disease.. G.V.H takes about 14 days to appear and is a potentially fatal disease.. The bonemarrow from the donor attacks the host as if the body was foreign.. Now it was time to wait to see if Michael would get G.V.H..The next 10 days were good, Mike was feeling OK and he looked good..On the tenth day post transplant I noticed some odd red rashes on Mikes back and underarms, so I called the doctor in to show him and wouldn't you know it, Mike had G. V. H. They had said it was a real bad sign for him to get it on day ten, They also said that it was rare for someone to get it this soon..After a couple of days it had gotten worse..Mike was getting real sick and had a hard time with the pain..The doctor again told me that Mike may not live another two weeks.... They put him on morphine to ease the pain. Mike was on the morphine for two weeks, he wouldn't even wake up half the time...It killed me to see him like that. After about 10 days on morphine, Mike woke up and said that he wanted to be taken off the stuff so he could stay awake, so I asked the doctors if we could and they weaned him off.. After he was off totally is when we saw the improvement in him... The G.V.H was not as bad and he was looking a lot better.... Mike beat it again...The doctors didn't know what to say.. They didn't think he was going to pull out of this one...
The next week was real good. Mike was getting better fast and they said that if he improves at the rate he was, that within a week he would be able to move to a room outside of the transplant ward... That was great, the transplant ward was a scary place, not only for Mike but for me also. Everything went well the following week, and Mike was put in the private room... He loved it. They said if all goes well, he'll be able to go home in a week or so...After he is released, we would have to be cooped up in the house for 100 days..
We just found out the name of his donor and we are in the process of seeing if we could make plans to go to Fla. to meet her at the hospital.. Being that we haven't fully recovered financially, I'm not sure when we'll get the chance. I'll write when we are going, then I'll write how it went...
I'm going to put some links on this page for people to get info on leukemia and bonemarrow transplants.. Thank you for reading our story and god bless you all...
Update 3/10/99
Michael is doing well. He is being seen down in the Children's Hospital in Philly now. They say he is doing very well. . He is back at school and loving every minute of it. We do allot of the things that we couldn't do for the years he was ill. We have become extremely close over the constant time we've spent together. Michael is an exceptional little boy. Allot of good has come out of such a horrible disease. Michael has matured into a very loving young man.
I have been in touch with his donor. She is a very nice person. Her name is Andrea, and she lives in Texas. She is a collage student. I e-mail her often. She saved my sons life and there is nothing I could do to show her the enormous appreciation that I have for her. If anyone would like to e-mail her, her e-mail address is ( littlelatin99@yahoo.com). Thank you for being loyal to Michael, myself and our story..
Michael and friend Josh on Bandit. Michael is the one in the back. This was a few months before transplant, he was still receiving chemo..
This is a link to Mikes own page.
Mikes page.
Links to Leukemia and bonemarrow information sites on the web.
Bonemarrow info
Bonemarrow donor links
Atlas of Acute Leukemia
Leukemia Resourses: Alfa..
Childhood Acute Myelogenous Leukemia
Acute Lymphocytic Leukemia (Childhood Leukemia)
Support Page for Parents with Special Needs Children
PLEASE VISIT OUR WEB STORE.
MIKE AND TOM'S WEB STORE.
PLEASE FEEL FREE TO E-MAIL ME AT THE ADDRESS BELOW..
© 1997 znuff56@aol.com