For those of you who need a refresher of where I left off (I did!) my last Our Story entry was February 7th. So here it is-sorry it has been so long in coming.

 

Earlier that week the surgeon had told us that they were going to be using a machine that they share with IU called the Stealth. Sounds like a fighter plane to me-and in a way that is what it does-finds the enemy and removes it. There are very few of these in the country and we were very fortunate to have this available to us. One of the problems with removing a brain tumor is getting to it and the fact that you cannot take out more then you absolutely need to. Usually when you remove cancer you take what is called a margin-this is alittle more than you need to take to make sure that you have all of the cancer cells. With the brain you just cannot do that. There is nothing "left over" that you don't really need. So this machine was going to help determine exactly where the tumor was and guild them to it.

 

The surgeon told us he was very confindent that he got all of the tumor but that Katie would probably need cancer treatments as a precautionary measure, because you really just don't know. He would refer us to an oncologist but for now why don't we go and see Katie in recovery. This was fine with me because I really was not comprehending anything he was saying to us and all I really wanted was to see my baby. To make sure she was ok.

 

When we got to the recovery area my parents and Cyndi were already there. My mom looked at me and silently asked the question. I started crying again and whispered it was cancer. My mom reacted just as I did. She started crying and her legs just gave out. Cyndi was standing right behind her and caught her. Katie looked awful. My heart just broke at the sight of her. She looked so small and frail. Her head was completely wrapped in gauze and her eyes were barely open. She was speaking but it came out as a hoarse moan. She just kept saying over and over-I have to go to the bathroom, I have to go to the bathroom. The nurse was trying to tell her that there was a tube in her bladder and that she could just go right there in the bed and in fact you could see the catheter had urine in it so she really was fine, but she wasnt buying it! This went on for sometime until they gave her some pain medication and she relaxed. After awhile we were sent back to the waiting room so that they could prepare her to move to ICU.

 

Back in the waiting room we moved our chairs together in a circle and just sat there. Not believing that this was really happening to our family. To Katie. I tried to answer my parents questions but I couldn't remember much of what the doctor had said. 

 

In the ICU unit Katie was placed in a private room right by the nurses station. We were allowed to see her two at a time. I was told I could stay in her room for the night but I had to sit in a chair and could not sleep. Katie was doing pretty well. She really did not complain of any pain and by late evening she was beginning to wake up more. After awhile the nurse asked her if she would like something to eat-jello, soup, etc. Katie said, "no, I would like my breakfast -I didn't get that this morning." She said she needed to eat breakfast, lunch and then she would be ready for dinner. She was so matter of fact and we could not convince her that it was now 9pm and breakfast was way over and do you know that that little bugger would not eat! That's my girl! Stuborn to the core-and what many say is what got her through this like she did.

 

At one point my dad and I were visiting and she turns to my dad and says, "you know papa only bad guys should get brain tumors-not little kids." My dad and I just looked at each other and with tears in our eyes said, "you are right Katie-so very right."  That is always my big question-if God can heal people then why do children die? They are so sweet and innocent. I was ANGRY. So very angry-at God. I remember a moment when I was in the family waiting room and Cyndi said to me, "it is ok to be mad at God-to act out-punch the wall-yell at him-what ever it takes." I wanted to hit something but I was so physically and emotionally drainded and all I seemed capable of doing was crying.

 

That evening the surgeon came to see Katie and we talked with him again. He told us that Katie had been diagnosed with a Primitive Neuroectodermal Tumor or PNET for short. It was a fairly agressive cancer but again he felt good that he had gotten all of the tumor-but there was always that chance that it had already spread to her spinal fluid. He told us that Katie had a 70-80% chance of a cure. Our family doctor, who is also a good friend of ours, called and we told her the news. I was still not in a good place at that time. I mean-ok they said she had a 70-80% chance but my mind went directly to the 20-30% chance of loosing her! I was still very confused about a lot of things so our family doctor called the surgeon and talked with him and then called me back. She was so excited, she said, "Missy he used the word "CURE", we don't say that unless we mean it! Yes, Katie's cancer is agressive but we caught it early and he thinks he removed all of the tumor." Ok-so things were starting to sound alittle better. But it was still hard at that time to see the big picture. My mind just kept saying MY BABY HAS CANCER!

 

Cyndi was wonderful through all of this. Friends were constantly calling the hospital to find out how the surgery went and neither Bruce nor I could talk about it so Cyndi fielded all of the calls. We took turns sitting with Katie so that someone was in there at all times. We didn't want her to wake up and get scared. Bruce, my mom and I were planning to stay the night in the family waiting room which was right across the hall from ICU-it had chair beds and sofa's and a bathroom with a shower. Families just basically lived there while there kids were in ICU.

 

Around midnight my dad and Cyndi left to head back home for the night. Mom and Bruce had gone to sleep. Katie was sleeping so the nurse told me to go and get some sleep. She promised to come and get me if Katie woke up and needed me. I was so tired and while I wasn't sure if I could sleep I needed to try. I was just dozing off when the door opened-it was Katie's nurse-she was awake and calling for me. I spent the rest of the night sitting in a rocking chair next to her bed talking with her nurse. It all seemed so surreal.

On July 3rd Katie had surgery to remove the tumor. I remember being nervous but feeling like everything was going to be ok. I know this is awful but on the morning of the surgery I decided I wanted a picture of Katie and I didn't have my camera. I was paniced about not having a picture of her. I don't know if I thought she was going to die and I needed one last picture or what. At the time I wouldn't let myself think of my reasons behind it. So my dad went on a hunt for a disposable camera. In the mean time our minister was going to be coming over for the surgery so Bruce called her and asked her to stop by our house and pick up our camera. She got there in time and I got my picture.

 

The surgery was scheduled for the am but got pushed back. The tension in the room was building by the hour. I just wanted it over. When they came to take her away I thought I was going to throw up right then and there. I had wanted to get things moving but when the time came all I wanted was to grab her and hold her for the rest of our lives. What kind of a mother was I? I couldn't protect her and make this go away! Why did it happen to begin with? Was it something I did? Was it the chemicals we had sprayed to get rid of the fleas our neighbors dog had brought in the summer before? My God did I do this to her?! It was one of those horrible seens you see in the movies. I was crying and holding her-they had to pull me away (not hysterical but close). Bruce held me tight but even that didn't help. He could usually fix anything but he couldn't fix this.

 

The surgery took several hours and again I prayed. And again I felt this calming peace come over me. I was able to get through the hours without many tears. Bruce, my parents, Cyndi and I all sat and talked about Katie, life and funny things that have happened on vacations we had been on. Strange I know but it took our minds off of the one big question we were about to get the answer to. Was it cancer?

 

The nurse came out and called Bruce and I back to a room-the doctor was ready to see us. The surgery was over and she had done very well. She was in recovery and after we saw the doctor we would be allowed to see her two at a time. We were taken to a room in the outpatient surgery clinic-the clinic was dark and quiet- it must have been closed for the holiday. We were the only two people there. We stood there in this little room waiting, looking at each other. Right before the doctor entered the room I looked at Bruce and he looked at me and at the same time we said, "it isn't going to be alright." I felt very cold, like a wind had just blown through. At that time the doctor came in. He said that Katie had done very well, but that the tumor was cancer. I cried out, "oh my God," and collapsed in the chair. My legs just wouldn't hold me and I was shaking so bad you could see it. Bruce came to my side and I remember the doctor saying, "now wait a minute don't get upset." DON'T GET UPSET-ARE YOU KIDDING?! LET ME TELL YOU YOUR DAUGHTER HAS CANCER AND LETS SEE WHAT YOU DO!!! I didn't say this but I was certainly thinking it. I couldn't really talk. Nothing in me seemed to be working-I couldn't stop shaking, I couldn't stand, I was having trouble breathing-but worst of all I had lost my peace. Now I know what that cold wind was that I felt right before the doctor entered-God had walked out on me.

Dr. A. called Bruce at work and left a message for him to come to the hospital, he was out to lunch. She then called Riley Hospital for Children and told them she needed the best neurosurgeon they had. We were told to come to Riley right then. We were all pretty much moving in slow motion, like being in a fog. Bruce and my dad got to the hospital. I remember everyone trying to figure out how we were going to get all of the cars home-I was in shock and couldn't drive. I still to this day don't know how they all got home.

 

Bruce and I drove to my grandparents house in the van to pick up the boys and tell them all the news. For days, weeks maybe, after this when I would have to tell someone what was happening I felt like I was talking about someone else. A story you would here on the news or something. Only this was US! I don't remember telling Tyler, I think Bruce did it when we got to my grandparents house. He cried alittle but I think more than anything he was very scared and we were making arrangements for the boys and the dog and he was scared to be left here, but we had to. I called my mom-in-law, Jean, from my grandparents house and told her we needed her. Jean met us at our house, she was to move in and take care of the boys, my grandparents took the dog-whom we had just gotten and was a handful in himself-my mom was to drive us to Riley.

 

I remember walking around the house thinking I have to pack, we have to leave NOW but I couldn't seem to do anything but wonder from room to room. I remember getting a phone call from our minister, Cyndi, she said I heard about Katie and I will meet you in Riley's ER. I thought my gosh how news travels, but I found so much comfort in knowing that she was going to be there. Thru all of this Katie kept following me from room to room, as I was packing for her and I, crying, "I don't want to go today-I will go tomorrow." I sat her down and tried my best to explain to her what was happening. Nothing seemed to make a difference until I said, "we have to go to Riley so they can make the hurt in your head go away." That did it. She would go. Her pain must have been so great that even though she was so scared she was willing to go just to make it better.

 

In the car on the way there, it is a two and a half hour drive, I sat up front next to my mom while Bruce sat in the back holding Katie, she finally dozed off for awhile. I kept looking at her to make sure she was breathing. I thought she was going to die-at any moment. I had this constant sick feeling in my stomach and I shook the whole way over there. How my mom was able to drive I don't know. Then to add to the situation we got lost and couldn't find the ER, where we were supposed to check in at. The roads are not clearly marked with signs to the ER-you would think the states biggest childrens comprehensive hospital would have a HUGE sign that says HERE WE ARE!!! But no they did not, so after the nice police officer gave us directions we found it-late. They gave Katie's MRI appointment away and we had to sit in the ER and wait for hours until the next available spot was open. I remember sitting in the ER and Cyndi was talking trying to take our minds off of things and we actually laughed alittle. I remember thinking this is weird, my daughter has a brain tumor and I am laughing. Katie did get her MRI that night. The poor thing was exhausted, we all were, and had been through so much already but she layed there as best she could for three hours while they took pictures of her head and spine. I was able to go into the room with her and I stood at the end of the MRI machine, it is a tunnel like machine and the body slides into it, and held my hand up inside the machine so that I could hold her hand to comfort her. I remember just standing there numb, from shock and fatigue, for three hours.

 

After the MRI Katie was admitted to a room. The staff was so wonderful, by this time it was after 10pm and we had been at all of this for thirteen hours, they let my mom, Bruce and I all sleep in Katie's room with her. Mom and Bruce slept on two chair beds and I slept with Katie in her bed. I remember laying there after everyone was settled and asleep...I felt so alone. So scared. I couldn't sleep but there was no one to talk to...then I remembered there was. God. He was there. I cryed, I prayed, I begged, I bargained. I felt comfort.

 

This incredible feeling of comfort would stay with me over the next two days while Katie was on IV steroids to try to shrink the swelling in the brain before they would attempt surgery. For two days we lived in limbo. We played games. We watched movies. We did anything and everything to keep Katie entertained and to try to keep ourselves from loosing it. Family and friends visited and called. I missed my boys. We met our neurosugeon who was incredibley comforting and explained the tumor and surgery to us in ways that we could understand. On the day of the CT scan at our hospital in town we had been told that the tumor was the size of a grapefruit, and it was, I saw the scan. Actually, what happened was the tumor ruptured, probably on Sunday when she experienced that incredible pain, and caused a huge cyst to form putting pressure on the brain-hence the grapefruit sized ball in her brain. The tumor was actually the size of a golfball. He told us that if you were going to have a tumor in the brain there were two "good" spots to have one and Katie's was in one of those spots! He also said that most of the time these tumors are not cancerous! GOOD NEWS AT LAST!

 

For those two days I felt God's presence with us in that room every moment of every day. I felt peace. Everything was going to be ok.

 

Then on Thursday July 3rd, for the second time in four days my world collapsed. 

Monday June 16th 2003, the day Katie got her ears pierced! She had been waiting for this day for what seemed like forever and finally I had agreed. She was 6 1/2 years old. My mom and I made a special day of it-we got her ears pierced, went out to lunch and shopping. She was so happy and looked so adorable in her pink gingham dress.

 

That night she complained of a headache-I thought maybe her ears were sore and causing it so I gave her some Tylenol and never thought anymore about it. Over the next two weeks she would complain off and on of a headache and being tired. It was summer break and she was playing outside most of the day and staying up late at night-normal summer break stuff. On Sunday June 29th we were at church and Katie started to cry that her head hurt. Her right pupil looked funny. We took her home and called the doctor. She said to bring her in first thing in the am. I am never certain why I just didn't take her to the ER but the end result would have been the same, plus after church I gave her some Advil and she said it didn't hurt anymore.

 

The next morning we went to see our family doctor. She checked Katie over, and over, and over. By this time I am starting to feel sick to my stomach-but I keep thinking she is going to say it is nothing or go see an eye doctor that it was a problem that needed corrected with glasses, but she never did. Instead she told us to go to the hospital for a CT scan of the head. I was alone with Katie and the doctor was worried about me driving...I remember her saying, "it is probably just a bad sinus infection-don't worry."  Yeah right, I have never seen a sinus infection make your pupils dilate. At the hospital I called upstairs to my mom, she is a nurse, and told her we were there for a CT scan. She asked me if I was scared and I told her I was. She got someome to cover her patients and came downstairs to wait with us. When Katie and I went in for the scan mom ran back upstairs to check on her patients and said she would be back as soon as she could. Katie was such a trooper through all of this. I don't know if she really realized what was going on-I am not sure I did really. I kept thinking this is crazy-it is not going to show anything and the doctor is going to think I am nuts for bringing her in for headaches. During the CT scan they needed to start an IV to give her contrast to finish the scan. They kept blowing the veins and I finally made them stop. Katie was crying, I was crying and I just kept thinking this is all for nothing! The tech said she would call the doctor and let her know they couldn't get the IV in and would the films they already had be enough. I thought, well this is good news because if there looked like there was something there they would want a better picture of it. Right? They sent us back into the waiting room and I hear them paging our Dr. to xray stat. What the heck? She was at the office seeing patients, why did she follow me here? And why are they paging her STAT! Dr. A. walks in and says, "I am going to go see the films sit tight." She immediately comes back out of the room and calls me into the womens dressing room area. I am really feeling sick now-why is she bringing me in here?! She tells me to sit down. Katie is standing right in front of me and Dr. A. is standing there too. She doesn't beat around the bush-she says,"Katie has a brain tumor." Just like that-my perfect world falls apart and the only thing I can do is scream "NO" and cry. Katie begins to cry and tells me I am scaring her and that she wants to go home. I try to hold her but she pulls away from me-still crying and wanting to go home. I keep crying, "NO I CAN'T LOOSE HER!"  My mom, who heard Dr. A. being paged to xray stat, comes running down from upstairs. She can hear me screaming from out in the main hall of the hospital and follows the sound. She is calling out, "what is wrong? what is wrong?!" I can't speak, just cry. Dr. A. tells my mom Katie has a brain tumor and my mom falls onto the bench next to me and holds me as we cry.

 

We are sitting on the same bench we were sitting on 7 years earlier hugging and crying tears of joy because we had just been told we were having a baby girl.

 

More tomorrow...goodnight.