The Diagnosis and The Beginning of Treatment
He looked at me with a very concentrated look of skill and experience in breaking bad news to parents, and said, "There's really no easy way to say this." I quickly reached over to Julie who was sitting in the chair right next to mine. She was also searching for my hand, and we sat there, holding each other's hands, squeezing with all of our might, hoping that the strength between us would shield Marissa from what the doctor was about to say.
"Marissa has leukemia."
Those were the last words I heard the doctor say that night. My mouth fell open, I held my baby tighter to me, daring anyone to try to take her from me. I squeezed Julie's hand even tighter. I looked to Julie as if there were something that she could do to take away the words this man in front of me had just said. She was looking at me in the same way. We both had tears streaming down our faces.
I was ready to accept a diagnosis of pneumonia, and admission into the hospital for a few days, but nothing could have ever prepared me for the blow of leukemia. I knew almost nothing about leukemia. Yes, I had seen and cried for the children at St. Jude who suffered from different types of cancer, but those were other people's children. Not mine. I didn't know any of those children personally. And although my heart went out to them and their families, I always thought that it would never happen in MY family. People with leukemia died. My grandfather's brother did. And that was the only close experience I had ever had with leukemia.
That's the only thing I could think of. That God was going to take my child away from me with this horrible disease. My 2 year old baby girl would never grow up. She would never get the chance to go to school, to have friends, to ride a bike, to date.
The rest of the night was like a whirlwind of activity. They admitted Marissa into the hospital and took her up to her room. I called my mom and told her what I had been told. I remember her crying on the phone. Marissa was as much her child as she was mine. She had been the one who had taken care of Marissa from the time she was 3 months old until Julie took over babysitting for me.
The next day, Marissa's Hematologist came in and told me that she would like to talk to me in the conference room. She wanted to go into more detail about Marissa's diagnosis and protocol for treatment. Marissa was asleep, so Julie came with me. I felt I needed someone else there to help me be strong and to help me take in all of the information I knew was going to be thrown at me.
The hematologist started out by telling me that Marissa had Acute Lymphocytic Leukemia. She explained that there were two typs of leukemia, and that if Marissa had to have one of them.. she had the good one. She explained the protocol that Marissa would be on and when that would start. She then told me to expect Marissa to live a very full and healthy life once the cancer was in remission. She explained that they would be doing surgery the next day to put a "porta-cath" in Marissa's chest. She said that the porta-cath would be attached to a major artery, and that this would eliminate the need for Marissa to be given an I.V. in her arm in the future. She said that the porta-cath would be used to draw blood as well as to administer her chemo. She said that the porta-cath was used to prevent the veins in her arms from collapsing. She also told me that Marissa would be given some "magic cream" or Emla Cream to put over the site of the porta-cath and that when this cream had been there for an hour, Marissa would not feel the stick to access her porta-cath.
The next day was hard. The doctor couldn't get surgery scheduled like she had hoped to. Everyone thought that Marissa would be taken into surgery early that morning, so she was not given anything to eat or drink. But, they weren't able to get her in until 5:30 that night. My aunt and uncle came to visit at about 5 that night. The orderlies who came to get Marissa and take her to surgery let me carry her down instead of wheeling her down in the gurney. But, when I had to put her in the bed so they could take her into the operating room, she started crying and clinging to me. I felt my heart breaking right at that very moment. I didn't want to put her in that cold, white bed so that they could cut her chest open. I didn't want the last two days to have happened at all. I just wanted to go back to when my baby was still a happy, healthy little girl getting into normal 2 year old mischieve. I wanted to hang on to her and protect her from everything and everyone.
It took everything I had in me to put my little girl in that bed and let them wheel her through those doors. But, I knew that if there was any chance whatsoever of her making it through this whole ordeal, I had to. I pulled her away from me and put her in the waiting gurney, and just kept hearing her crying over and over, "Mommy! Mommy! NO!" Tears were streaming down my face, once again, as they wheeled my little girl through the doors of the operating room, hearing her cry and scream out my name. I felt like the worse mother in the world! My heart was breaking into a million little pieces and I just knew that she would never forgive me for that. There was nothing I could do though, but let her cry. I hugged myself tight and turned away from the doors, trying to block out her cries. Julie and my aunt put their arms around me and lead me to the waiting room, where I did my best to compose myself.
Marissa came through the surgery just fine, and life in the hospital took on a normal, everyday routine. I really had a LOT of help in the hospital, and can't imagine having gotten through it without it. My sister came in from Potosi with her girls. My mom finally came up, and then, of course, there was Julie, who had been by my side through all of this from the very beginning.
There was a little girl named Rose who was admitted during our first week in the hospital. She was also 2 years old, and she was our next-door neighbor, if you will. Rose's parents and me and my clan started talking, and we all became very close. They were not only our hospital neighbors, but our friends. When Rose was first diagnosed, they thought that she had the same kind of leukemia that Marissa had. But, unfortuantely, they found out a week later that she didn't. She had the bad kind of leukemia and had to have a bone marrow transplant.
They started Marissa's chemo the day after she was admitted into the hospital, and told me to expect her hair to start falling out within the first two weeks. After the first week of chemo though, I could see the "old" Marissa starting to come out again. She was feeling better and her fever was under control. I thanked God everyday for giving my little girl her life back.
Everyone was getting quite comfortable with the hospital routine, but, the day finally came when they told me that Marissa was going to be discharged from the hospital and going to start her chemo at the clinic. So, we packed up Marissa's "homey" things, said goodbye to all the nurses that had been so great to us for the past two weeks, and said a teary good-bye to Rose and her parents.
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Hemoc Clinic Life
Our first day at the Hemoc Clinic was a scarey one. There were so many kids there. Some of them bald from chemo, some of them looking very sick, some playing like "normal" kids. The nurses in the clinic though were absolute angels and made us feel very at home and welcome. They worked so hard at trying to appease every child's wants and needs there. They explained to me exactly what we were going to do, and which medications Marissa would get and when. The first two weeks out of the hospital seemed like we really just moved from being inpatient to outpatient living in the clinic. The days were long. We got there early and left late. Marissa was getting red blood cells and platelets as well as her chemo. It got to be second nature to push around an I.V. pole as we went from the examining room to the waiting room to the play room to the bathroom.
Finally, the day came when the doctor decided that it was time to test Marissa to see if she was in remission yet. It was January 31, 1996. They explained to me that in order to do this, Marissa had to undergo a spinal tap and a bone marrow test. They had done this when she was in the hospital, but, I wasn't there for that one. For this one, I was expected to be in the room with her. I'm not sure who it scared more, her or me.
They gave her some medicine through her porta-cath tomake her sleepy, although it did not knock her out like a normal anesthestic would have. They also gave her another drug that produced an amnesia type affect so that she wouldn't remember the actual spinal tap. They determined the dosages of these drugs according to her age, height and weight. However, no one knew that she had so much adrenalin pumping through her that the doses they gave her had no effect at all on her. They also had some problems getting the needle in her back the right way. The end result was that they had stuck her 6 times before they finally got it in the right place. Unfortunately, she remember every single minute of it.
After the lab results came back on her spinal tap and bone marrow test, I was told that Marissa was now officially in remission. Her white blood count, which was .5 (healthy cells) when she was diagnosed, was now 1.0, and there were no signs of leukemic cells in her bone marrow or her spinal fluid. We had made it through the induction period!
But, Marissa still had another 5 months of intensive chemo to go. During this five months, she would visit the clinic two times a week for chemo and she would get a spinal tap once a month. At one point, she would get a spinal tap once a week for four weeks. And at another point during this phase, she would get chemo four times a week. However, for this one, we got to choose whether to come into the clinic for this chemo or to have a home health care nurse come to the house. We chose to go to the clinic on Monday so that they could access her "port", then receive the other three days of chemo at home. Once again, Marissa made it through this with flying colors! And amazingly, she still had all of her hair after 5 months of chemo!
The kids in the "chemo clinic" as Marissa called it, were some of the greatest kids I'd ever seen. They were so giving of their love, their friendliness. Some of them, like Marissa, was shy. but, once they opened up, they absolutely shined! There was one little boy, and I probably shouldn't call him little, he'd probably wring my neck if he heard me because he was 15 at the time. He was an absolute angel! Marissa was not quite 3 yet, and she wanted to play Pretty Pretty Princess. I was so tired from running back and forth from home to the clinic, I just did not have the mental energy to play with her. But, this boy sat down and played this game with her. And he played until she was ready to quit. It was just so amazing to me that a 15 year old boy would be willing to sit down and play a "little girl's" game with a little girl who really wasn't even old enough to play. And he never complained or even acted like it was a bother to him. I don't know about anyone else, but, I don't know too many 15 year old boys who would sit down and play a game with a 2 year old girl.
January and February passed us by. March came and Marissa celebrated her 3rd birthday. She wanted her party at McDonalds, and that's where she had it. I've never given a birthday party for any of my kids that has actually turned out my whole family. But, everyone came to this party! It was really a great day, but, kind of sad to think that it took a little girl being diagnosed with a terminal illness to bring them all together.
In April, Marissa contracted some type of infection. No one knows where she got it from, but her temperature skyrocketed to 104 degress. I called her hemoc doctor and told him what was going on. He told me to get Marissa to the hospital ASAP. So, once again, to the hospital we went. It turned out that Marissa had some type of staph infection in her blood., which required her to be hospitalized for 10 days. This was only the second time she had been hospitalized. The first time was when she was diagnosed. They started her on I.V. antibiotics immediately, and within a couple of days, her fever came down. They kept her for the ten days to make sure that she was going to continue on the road to recovery from this infection. Infections can sometimes be deadly to a person who is immune supressed, which is what all cancer patients are due to the doses of chemo being pumped into their bodies. But, Marissa was discharged from the hospital with a clean bill of health, other than the leukemia.
The beginning of May came, and we only had one month left before Marissa started on maintenance chemo. I was talking to Marissa's "Dr. Karen" (who was actually her primary nurse at the clinic) and we were both saying how amazed we were that Marissa still had all of her hair. Karen told me that very few chemo patients actually managed to keep their hair for such a long period of time after starting chemo, and that if Marissa didn't lose her hair by the time she started on maintenance, chances were that she wouldn't lose it at all because the doses of chemo that she would be on then wouldn't be enough to make her hair fall out. The thought that she may not lose any of her hair was very exciting to me!
About two weeks later, I was taking the beads and braids out of her hair so that I could wash it. As I was sliding the beads out of her hair, clumps of hair started coming out with them. Tears welled up in my eyes, but, I tried to hold them back. I didn't want Marissa to see me crying over this. I felt like I had to stay strong for her sake. I didn't want her ashamed that she would have no hair because of something that she couldn't help. Julie walked into the room about that time, saw what was going on, and went to get a sandwich bag to put Marissa's hair in. Marissa thought that it was funny that her hair was falling out. She was really excited because this meant that now she could be bald like her brother. (Randy had had his head shaved for the summer.)
When all of the hair that was coming out finally came out that day, Marissa only had a few small patches of hair left. After thinking it over, and talking to Julie, and asking Marissa about it (even though she was only 3, it was still her hair), we decided that rather than let the rest of her hair fall out a little at a time, we would shave the rest of her hair off. As much as seeing my daughter with no hair hurt my heart, looking at her smiling, with her eyes shining bright, it was hard to feel too bad about it. She just had this amazing way of making me feel good when I normally would have been totally depressed. Marissa was so proud of her newly bald head that she refused to wear hats at all. She wanted everyone to see that she was just as bald as her big brother.
The beginning of July came, and that meant the start of maintenance chemo. We had reached another milestone in the fight against leukemia, and so far, Marissa was winning. As August came, Marissa wanted to go to school like Randy and Jessica. I had been thinking about going back to work, and Julie had taken a job at a private school in the daycare part. So, I enrolled all three kids there. Marissa thought it was cool getting to go to school with Randy and Jessica, and thought it was extremely cool to be there with her "Aunt Ju" and Lisa (Julie's sister and also my friend). I knew that Marissa would be given her medicines that she had to take, and that if anything at all happened, they would be sure to call me.
The maintenance stage of chemo went pretty well. We had good points and bad points. An organization called The Dream Factory sent us to Florida for a week, and that was a vacation that no one will ever forget! And Marissa ended up hospitalized three more time during this period. Once was for some unknown type infection. She just came down with a really high fever one day, and no one could figure out what the problem was. They admitted her into the hospital and started her on I.V. antibiotics. Her fever went down, and she was discharged after 5 days. Then at another point, she came down with Hand, Foot, and Mouth Disease. This one got us 10 days in the hospital, but only because she had such huge crater sized sores in her mouth that it hurt her to eat or drink anything. So, they kept her on an I.V. so that she could still get the nutrition she needed.
Then came the biggie. I was told that under no circumstances should Marissa be exposed to chicken pox, and that if she did, I should notify her doctor's immediately so that they could give her an injection to counteract the chicken pox. Now, most people think that chicken pox aren't a really big deal, every child gets them. But, to a child who is immune supressed, chicken pox can be deadly. So, I made certain to tell everyone that had any contact with Marissa that if their child got chicken pox, please keep them away from Marissa, and if she did get around them, to let me know immediately. Unfortunately, a neighbor who lived up the street from me did not take me seriously. Her son, who was the one person Marissa played with on a regular basis, came down with chicken pox. She did not tell me he had it, and let him play with Marissa while he was contagious. He didn't get a bad case of them, and only had the bumps on areas of his body that weren't exposed, so no one knew he even had them.
Then, one day, Marissa started running a fever. It wasn't a high fever, so, I gave her some Children's Tylenol, and made her stay in and watched her. This girl came down to visit later that day, and I was telling her that Marissa was running a fever, but didn't seem to be feeling sick. She told me that it could be chicken pox because her son had just gotten over them. I couldn't believe it! I called her doctor, and was told that if she was running a fever from chicken pox already, it was too late to give her the injection to counteract the virus. I would just have to watch her and if I saw any bumps, to call him back and bring her in. The next day, Marissa started getting the bumps. I called the doctor back, and took Marissa to the hospital. Fortunately, she only had a very mild case of them, but she was still hospitalized for 13 days over that one, in solitude.
The rest of her maintenace went off very well. That was the last hospitalization we had to go through. Marissa is now 6 years old, has been in remission for almost four years, and has one more year to go before they claim her "cured", although there's no proven cure for leukemia. She may still relapse at any time after being declared "cured". But, I now have a normal, healthy, and usually happy child again. She still has to go to the clinic for a finger stick once a month, which will dwindle down to once a year eventually. But, so far, so good.
She is also experiencing some side effects of the chemo. She has several problems with her eyes and has had to wear glasses for several years now, as well as go in for eye therapy. There's a possibility that she may have to eventually have surgery on her eyes at some point, but, we're hoping that the therapy will correct the problem without surgery. She also has some learning disabilities that are being worked on. She doesn't seem to catch on to things as quickly as her peers in school. We had thought about enrolling her into Special Education, but, decided to try a private tutor first. And so far, the tutor is doing wonders with her. She's really flourishing with the one on one attention, and catching up to the rest of her 1st grade class slowly but surely. She also suffers from bouts of depression, and is now seeing a psychiatrist for that.
I guess you could say that leukemia has definitely left it's mark on our lives. Some good, some bad. But, so far, we've made it through it, which was something, if you had asked me 4 years ago, I couldn't have told you I could have done. It has made my whole family stronger, and I think, better people. My kids are now more accepting of people that had disabilities, whether it's that they're bald from chemo, mentally retarded, or physically handicapped. They are more sympathetic than they used to be to other people's feelings and pain. But, they are still children, and are prone to those typical child attitudes at times.
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Thanks and Dedications
This is the part of the web page that I've been waiting to do! There are so many people who have been so great and helped so much through all of this. And then there are those that touched our lives for a short time, and are no longer with us. I can never say thank you enough to any of them, and the words thank you just really don't seem to be enough. But, this is where I'd like to mention those speical people.
So...
To the doctors and nurses at Cardinal Glennon Children's Hospital:
Karen, Marcia, Dawn, Mickey, Peggy, Dr. Wall, Dr. Chu, Pat, and the volunteers.. THANKS YOU GUYS FOR ALL THE GREAT CARE YOU GAVE MARISSA AND THE SUPPORT YOU GAVE TO ALL OF US!
To the families and friends we've made at the clinic, and there are too many to mention, but, thanks to everyone at Cardinal Glennon's Hemoc Clinic.. you're all great!
To my family and friends, and here we go with the long list..
Randy and Jessica, you two are great! I'm glad you're my kids!
My mom, the greatest mom in the world, even if we don't get along all of the time..
Cindy, thanks C for being there, couldn't have done it without you..
Allyssa and Shelbee, I love you guys!
Julie, my best friend in the whole world!
Lisa, Michael.. thanks for loving us so much. We love you guys too!
John, without you I would never have gotten out of that hospital.. thanks..
Miss Pat, thanks for caring so much for Marissa, your prayers really helped..
Big Cindy and Big Lary, you guys were great, thanks for all your support, prayers, and help..
thanks to everyone in the Potosi tri-county area, your prayers were very much appreciated..
thanks to everyone at Gateway Christian School South for taking such good care of Marissa while she was in school there..
thanks to my whole family (Aunt Linda, Uncle Lois, Terry, Chris, Frank, Connie, Jake, Eric, Christopher, Dan, Vickie, Katie, Gary, Patty, Meagan, Dalis, and to my Gran)...
and in case there's anyone else I've forgotten to mention, I'm sorry.. but, thanks to everyone!
Now for my friends online that have supported and cheered me on while making this page. They've listened to my complaining about doing this page, the million times I've started it over, and they've all given their opinions on how it was looking. So, here we go:
Brandon, my bestest bud, loves you Bran!
Stacey, you're great girl! Good luck with Matt..
Dawn, you are the bomb!!! Thanks for listening to me whine about learning html.. lol..
Chris, you silly boy.. you better listen to your mom!
John, you're great! Thanks for being my friend!
And everyone else out there in inet land.. where you find the nicest people in the world!
Now.. for the dedications.. this is the part that's tough.. but, here it goes..
First of all.. to Marissa.. this page is especially dedicated to you. I love you baby. You are a very strong and special little girl, and remember babe, there's nothing in this life that you cannot achieve! You've fought the battle of your life.. and you WON!!!
To Rose, who lost her fight with leukemia during one of Marissa's hospital stays. You will always be remembered Rose! You were a beautiful and special little girl! We were very lucky to have known you.
To Kenny, who also lost his life to leukemia. We only knew Kenny for a short time, but, he was a special boy. You're remembered in our thoughts and prayers Kenny.
And last, but definitely not least.. To Carl, who is, I believe, Marissa's guardian angel. There is a story that goes with this, but, I will make it short. Carl was a very good friend of mine who passed away just a few weeks before Marissa was diagnosed. Marissa was diagnosed on Carl's birthday, and when he was living, he and his wife could not have children of their own, so Carl would always beg me to give Marissa to him. Of course, I wouldn't. But, he loved Marissa to death! When Marissa was first diagnosed, and I realized that she was diagnosed on Carl's birthday, before I knew that she would live, I was so angry with Carl! I was actually finding myself hating him. I thought that since I would not give Marissa to him when he was alive, he was trying to take her from me in his death. I did, however, come to realize that this was not so. And do believe that everything happens for a reason. And I think that one reason for Carl to die so unexpectantly at 28 was so that he could watch over Marissa during her fight with leukemia, and help her through it. So, Carl, a million thanks to you! I love you! And you will live forever in our memories!
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