Her tumor was removed on March 8th. This was a Monday. She dressed all in red just in case any blood got on her clothes. This would make it easier to get it out and if it didn't all come out it would blend in better. She was terrified but never told anyone. She only wrote it in her diary. She was so strong and brave. On this day we heard for the first time that it was indeed cancer. Our journey with cancer had begun..
On the third day I (her Mom) heard words I never wanted to hear. I can't! We were asked to get her up and she said, "I can't." With encouragement she did get up only after she said, "It feels like I have a brick on the back of my head." By Friday she was home and running around like a regular 8 year old.
After Brain surgery the following three weeks consisted of many appointments. We had hair appointment to make a hairpeice from Kathyrn’s long beautiful hair. We had neurosurgeon appointments to follow up on surgery. We had oncologist appointment and radiaology appointments. Kathryn had several MRI’s to see how surgery served her and to set her up for radiation. She had tatoos put on her back for radiation and a mask made for her to where during radiation. She had a port put in and it seemed that we were running to some kind of appointment every day.
Then it all began (THE TREATMENT). She started radiation along with vincristine every day, five days a week for 6 or 7 weeks. The first few days weren’t so bad. But then she ha a reaction to the chemo vincristine. She threw up on Tuesday afternoon. The throwing up didn’t stop. I took her in to the oncologist and he said there was nothing wrong with her. Ok , so we go home and she can’t eat because she just throws it up and she can’t sleep. I take her in again and I get the same thing. there is nothing wrong. Well the is starting to get to me so I by pass the oncologist and go call the radiologist. They tell me that it sounds like she is major dehydrated and I should bring her in and they will give her fluids by IV along with anti nausea meds to stop the vomiting. This doesn’t work and by Friday we go in to see a specialist. I see the chest Xray and I know immediately that there is something wrong. It shouldn’t be all black. Well, she was full of gas and in terrible pain. No sleep now for days and no food or ability to poop or pee. So we call the ER Friday night and tell them we are coming on Saturday morning so they would be ready. The other oncologist was on call and he said that the vincristine will do this. It paralizes the digestive system and makes it all stop. So, there was something wrong. I was so mad when her oncologist came in the next day that all I could do was send the evil eye message to him. I stood there and imagined taking is tie and choking him and his stupid statistics. After five long days in the hospital, a couple of enamas and a constant Iv drip of morphine we finally went home. During this stay Scott (Dad) bought Kathryn a puppy. She named her Princess Violet. Later she told us, “If you didn’t get me Princess I don’t think I would have ever come home.” Wow, the power of the love of a little puppy. We did get Princess to help Kathryn see that she needed to be home to take care of her new little puppy. Home we went
As the treatment progressed Kathryn lost all of her hair. This was within just a few days. She became very weak and lost weight. She wasn’t big to begin with and when she lost 11 pounds she looked like a little skeleton. She had the dark sunk in eyes too. My cousin told me about megas. She said we use it all the time with adults in oncology to get them to eat. This sounded much better than the doctor’s solution of more decatron that has numerous side effects one of which is terrible mood swings. We already had experienced that just before and after surgery. His other solution was to put her in the hospital and stuff a feeding tube down her throat. That wasn’t appealing either. We promised to keep her out of the hospital as much as we could. We don’t break our promises. So the megas worked beautifully. The doctor said they had never used it before on children and I told him that he could be the first. After Kathryn used it wth great success they started using it more. We played the weight game. When you hit a certain weight 40 pounds you can stop taking it but when you drop below 40 you have to start taking it again.
By the end of May Kathryn wanted to go to school. we went in for show and tell and she would spend a few hours here and there at school. She hated being out of school. She actually went back the last couple of weeks full time.
After radiation they give you a few weeks to recover and then the routine drugs start. Her protocal was Vincristine once a week and CCNU and cysplatin every 6 weeks. the cysplatin is very toxic and is given over several hours as an IV drip. Then they give a saline flush over another 8 hours or so. I (Mom) was trained how to stop the pump and take out the IV needle from her port so we could do the flush at home. We didn’t do the last dose or two of the cysplatin. It was effecting her hearing and I had a long talk with the hearing specialist about how Kahtyrn’s life might be if this hearing loss were to continue on the same path. It wasn’t good. Hearing aids, sitting in the front of the room and the teacher required to speak through a special device. I also consulted three other doctors. Two of these doctors were from Seattle and one from California. We had been giving Kathryn natuaral supllements since July and they seemed to work. All three doctors said to drop this drug and two of them said to drop all of the drugs. We only dropped the cysplatin. Her doctor was not happy. I do not and will never regret this decision. We gave Kathryn a quality life!
During the 48 weeks of this drug protocal Kathryn was a real trooper. She didn’t feel well all the time but she didn’t want to miss out on life. While we were camping that summer on Hoods Canal she sat there on the beach with her bald little head. Another child walked by and stared. Kathryn turned to me and said, “It’s ok if she stares at me because she just doesn’t understand shy I am bald and she is trying to figure it out.” I’m still blown away that my 8 year old had that kind of insite.
School started back up and Kathryn only missed about 3 or four days for those long IV drip days of cysplatin. One day the clinic called and said Kathryn’s counts were too low for her to be in school. Well she was already there. I called my Dad to go pick her up and told him to wait until lunch time. I also warned him that she would be upset so go prepared. Dad must have explained it just right because she went without too much of a fight.
Long showers were also something that became a coming theme to feeling better. Kahtyrn would stay in the shower for an hour sometimes. Her brother would do things to comfort her too. He brought home the mice from school and would have Kathryn hold them when she didn’t feel well and this would be a great distracter. Lots of snuggling too.
The big day finally came. May 5th 2000. This was Kathryn’s last day of chemo.