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Journal
2001
Here you will find an account of what happened and how things are going for Katie. It contains all of the events that have transpired as well as our personal feelings and thoughts.
Enjoy!
09/04/2001 Kevin - Katie had not be feeling well for a couple of weeks. She had been complaining about her legs hurting when she walked. Also, she was tired all the time. We decided to take her to Health Services at Progressive. I left work to pick her up from school. When we got back, she was seen by Eileen Gordon. Eileen did a thorough exam. She noted that Katie had several bruises. I had assumed that she had bruises because she was a kid. She asked me to step outside to speak. That was when she told me that she thought Katie had Leukemia and that I should take her to Hillcrest Peds emergency room. I took her to the ER where they drew blood. They confirmed that Katie's white cell count was  65,000. They arranged for us to go downtown to Cleveland Clinic. I called Sharon and Dave to have them pick up Donna and Mom and to meet us there. She was admitted immediately. She was given an IV. Dr Levien and about 300 other doctors and nurses check her out. Later that evening she was given a blood transfusion and platelets.
09/05/2001 Donna - Today was more testing and still trying to figure out which kind of leukemia she has. Finally, later on in the day, the diagnosis was that she has 2 kinds of leukemia. ALL and AML. Which ever she has the most of, that's how they are going to treat it.
09/06/2001 Donna - Today she got a Broviac catheter that has 2 ports. She had another transfusion and platelets today. At about 5 PM, they told us she was ready for surgery. By the time they came and got her and got her ready, it was about 6:50 PM. The surgery was about an hour and as long to recover. About 9:30, we came back to the room. She had to take some medicine so they crushed it up and put in grape juice. She had 2 juices and then her meds and then vomited. She was having another procedure in the morning and was not allowed anything after midnight. Because she hadn't eaten all day, she needed to eat. We waited and about 11:15 PM, she finally ate. Sleep didn't come for a while. That was a hard night.
09/07/2001 Donna - At noon they came and got Katie for a spinal tap and a bone marrow biopsy. The procedure itself only took about 30 to 45 minutes. She was in recovery for about an hour Once all the medicine wore off, she was in a lot of pain for the rest of the day. Also, she was hungry. We came back to the room around 3:30pm but still didn't get anything 'til 7:00. That was a battle. In surgery, she had her first dose of chemo and again later in the day. Also she started her meds. She started getting tingling in her legs and gave her fits. That lasted about 20 to 30 minutes. She continued to be in pain so they gave her Tylenol with Codeine. It just didn't work. When we first came into the room, she would sit with one leg dangling from the bed. Then later move to the middle of the bed and sit Indian style. When it was time to go to bed, she would lean over, but would sit-up immediately. She would cry and complain. So finally they gave her morphine. She still fought that 'til about 2:00am. It was a really bad night.
09/08/2001 Donna - Today was much better. She did throw up her breakfast, though. Finally we decided that crushing her pills was what was making her do that. So we would have her swallow them and then take a drink. That made it better. Also, we had to make her get up and walk. She looked like a grandma. She was all hunched over and hanging on to the pole. All in all it was a good, quiet day.
09/09/2001 Sunday Donna - The doctor was in this morning. He said everything is great!! Her white cells are down and she will need another blood transfusion in a day or so. Also, he said that her blood sugar was high but wants to monitor it more before he decides whether or not to start insulin. Another good day.
09/10/2001 Donna - So far this morning she does not fell well at all. Kathy, her nurse, got her counts for the day and they were way down. They were in the 600's and the need to be in the 1000's. Also today she needed platelets, therefore she had benadryl (which makes her antsy). That made her sleepy on top of being tired already. Then she got one of her chemo drugs in the form of a shot into her thigh. About an hour later, she got blood. It still took most of the day before she perked up. Around 8:00pm, we finally took a walk down to the playroom and the fish tank. The tank was her favorite place. She likes the clown fish. She didn't sleep well
09/11/2001 Donna - Pretty much the same as yesterday. She is still not eating and she says that her jaw hurts. Otherwise it was quiet. The leukemia cells are down to 9% from 85%. Kevin did not come up today. Today, our country was attacked. At about 8:45am, a plane flew into the World Trade Center. A half hour later, a second plane flew into the second tower. A third plane flew into the Pentagon. There were reports that one was headed for the White House. It crashed in PA.
09/11/2001 Kevin - I was on my way up to the hospital when I heard the news on the radio. I thought it was some sort of joke. I changed the station and heard that a second plane had crashed into the towers. I immediately turned around and headed for home. I decided that it would be best to stay at home. If they needed to call off school, I would need to be here for Alyssa. I spoke with Donna and she agreed that they were safe where they were and it would be better for us to stay home. The city of Cleveland was on high alert and we did not need to be on the road.  
09/12/2001 Donna - Katie woke up and not in a good state. She didn't feel well and still didn't want to eat. Around 1:50pm, she got her L'asparaginase shot. The needle is about an inch long and has to go all the way in to her thigh. Then I left shortly after that to go home. This is the first time that I have been home since the day she was admitted. Kevin stayed with her overnight. I did get her to eat about 6 bites of her mashed potatoes before I left. Kevin said she ate one bite and then threw up. A good night though.
09/13/2001 Donna - A good morning. Kevin said she ate half a bowl of cereal and at lunch, she ate half of her chicken nuggets. The doctor came by and told us that her last blood test showed she was leukemia free!!! She also has a bone marrow biopsy at 10:00am tomorrow. At supper, she ate the rest of her nuggets and half of Kevin's fries. She is eating much better. What a relief! They are talking about weaning her off of her IV's so that by Sunday, she can get off of them.
09/14/2001 Donna - Not a bad day overall. Today, she had another bone marrow biopsy. She did really well with this one. Otherwise, it was very quiet. They took her off her IV's. That was really great. That did that real late.
09/15/2001 Donna - A pretty quiet day. She did get blood today.
09/16/2001 Donna - A very quiet day. She ate and drank well.
09/17/2001 Donna - A very good day. She got her shot around 12:40pm and at 2:10, they let us go home!!! We had a good day at home.
09/18/2001 Donna - Today was good.  About 1:45 the home care nurse came over to help me with the Broviac dressing and flushing the ports.  I think I did okay.  Later today Dave, Sharon, and Mom came over.

09/19/2001 Donna - Today she had her 1st outpatient visit.  They started with a blood draw and but they were having trouble.  She had the same problem the last couple of days in the hospital.  So they made her take deep breaths, cough, and finally had to resort to something called TPA. It helps to unclot the tube, however she didn't get it today.  It was a liquid medication that they would inject into her tubie.  It would take around 30 minutes to take affect, so that meant extra time that we had to hang out there.  Today she was scheduled to get her shot, but after her counts came back we found out that she was gonna need platelets as well.  Once she gets her shot she has to wait for 1 hour to make sure she has no reaction.  Since she didn't have a constant flow of Benadryl in her veins, the shot hurt her a lot.  I had a hard time with this and Kevin had to leave.  This wore her out so she fell asleep while she waited.  After we got home she just laid around for the rest of the day.

09/20/2001 Donna - Today was pretty uneventful.  Nothing new.


09/21/2001 Donna - Today was the same as Wednesday.  1st they had trouble with the Broviac again.  So they ordered some TPA.  Once they order something it take time to get the order, fill it, and get it to us.  We were there from 11:40 till 4:45.  We were home by 5:30.  That was a long day.


09/22/2001 Donna - Today was a good and quiet day.


09/23/2001 Donna - Around 9:45 a.m. Katie decided that she was hungry, so she got up to fix some cereal.  While she was standing there
deciding, she fell to the floor for no reason.  She got up and fell again.  By this time Kevin and I got to her and helped her up.  She had a glassy far away look in her eyes.  We asked her if she was okay but she really didn't answer us.  We helped her up and she was walking like she was drunk.  So we decided to call Dr. Levien.  This bought her a hospital stay till Tuesday.  Later that day she got a transfusion of something similar to plasma.  Needless to say she was not happy about being at the hospital again.


09/24/2001 Donna - She felt very tired today.  She got platelets and her shot today.


09/25/2001 Donna - Today she had to get blood and that took till about 3:30.  They also had trouble with her tubies again.  They let her go home after her blood.


09/26/2001 Donna - Today is her shot again, so they started with trying to take blood and of course there was trouble again with her tubie. They ordered the TPA and her shot.  They came at the same time, so they did the TPA and then her shot, that way there wasn't a double wait.  Well the TPA finally worked and they were able to draw blood. We were able to get the results and we left.  We were home by 1:30p.m.

09/27/2001 Donna - Today was uneventful.  She was in a pretty good mood all day.  She did take a nap around 6:30 for about 45 minutes.  She's starting to really loose her hair now.  I'm really getting freaked out about this.  She likes to pull it out and throw it at us.  She thinks that's funny.


09/28/2001 Donna - Today she had chemo.  Of course her tubie wasn't working again.  So they sent her to x-ray to see if the line was kinked.  It wasn't.  They called Barb (the Broviac lady), she said to put TPA in for 2 hours.  They still had to draw blood  out of her arm.  This was very hard because she really cried.  She was down for the rest of day.


09/29/2001 Donna - Today was a quiet day.  We went to Keith's house for supper.  We had a good time, it was good for her to get out being she's still neutrapenic. She has to wear a mask when she goes out of the house.


09/30/2001 Donna - Another quiet day.  We did go to Dave and Sharon's because Gary, Sue and Melinda are in town.


10/01/2001 Donna - Today, Katie is supposed to have blood drawn to check her counts.  They can't get any again, so they are gonna take it out of her arm again.   They called the surgeon who put it in and he wants to look at it later this week, but before she comes in on Friday.  If they need to adjust the tube they can do it in surgery on Friday (Bone Marrow and Spinal tap). We'll see what happens.  Well they just called and they want to look now so we're going down now.  They are gonna shoot a dye in her tube and x-ray it to see what's wrong.  After looking at it, they determined that it is clogged and laying against the wall, therefore double trouble. They are going to replace it on Friday when she has her Bone Marrow biopsy and Spinal tap.  

Tuesday Oct. 2, 2001 Donna - A good day.  We went for a walk around the block.  She got tired about half way through and needed to sit down.  After she rested for a few minutes she was able to make it.


Wednesday Oct. 3, 2001 Donna - Another good day.  The hospital called to let me know that they can't do the surgery on Friday.  They will have to do it on Monday instead.


Thursday & Friday Oct. 3&5, 2001 Donna - Nothing new to report.  Good day's.


Saturday Oct. 6, 2001 Donna - Another good day.  We had a hat party for Katie.  Someone told me they did it for a woman with breast cancer, so I thought it would be a good idea.  Dave, Sharon, Keith, Lillian, & the kids, and the Versaw's came.  Several people who couldn't come sent hats.  Momma, Mom, and  Lori Dugger couldn't come so they sent them over.  Terry Mills got her a couple of the surgical caps also.  She got about 10 hats and about 5 bandana's.  This was a good day for her.  Her spirit's were high today.


Sunday Oct. 7, 2001 Donna - Another good day.  Nothing new.


Monday Oct. 8, 2001 Donna - Today, she is going to have surgery.  A bone marrow biopsy, a spinal tap, and they need to look and her Broviac.  We got here around 9a.m.  We went to Dr. Levien's office 1st.  They gave us her chart and sent us to surgery.  When we got there Dr. DeFeuri told us he was gonna take out her tube and put a new one in on the other side.  He said that it would only take about 45 min.  After recovery we went back to the office.  When we got back to the office Dr. Bringelsen told us that Katie would only have to come in once a week from now on. We are really excited about this news.  Katie is okay but a little sore.


Tuesday-Saturday Oct. 9-13, 2001 Donna - Yesterday Dr. Bringelsen said that Katie was allowed to go out in public now.  She is no longer neutrapinic.  On Tuesday, we ran some errands.  Did some grocery shopping and went to Target.  Wednesday - Friday were quiet.  On Saturday we went to Target in Mayfield to see Beth, our old pharmacist.  She was really excited to see Katie.


Sunday Oct. 14, 2001 Donna - Today was Katie's 1st day back to church.  We went to Sunday school.  That pretty much wore her out.   We didn't let her go to children's church because there was a sick child in there.  She stayed with us through the whole service.  She laid on my lap most of the service.


Monday Oct.15, 2001 Donna - She had to go for chemo today. We found out she was supposed to have a spinal tap again and that she was gonna need them every week for the rest of the month. We went ahead and made the appts. for those days.


Tuesday Oct. 16, 2001 Donna - She has to start a new drug today.  It is called Ara-C.  It is in a suringe and it is pushed through her tubie.  It is a 4 step process that has to be done for 4 days on, 3 days off, 4 days on and then it's over.  It only takes a matter of 10 min. and your done.  So because it would be pointless for me to run up there every time for 2 weeks, I got my lesson today.  We had to be here at 10:00 a.m. today.  She is also getting Cytoxin today so they will give her some Zofran first.  It helps with queazy stomachs.  The Cytoxin takes about 3 hours.  It was a pretty long day, but they were able to get to her in about 45 min. early so we were out of there by 1:30p.m.


Wednesday Oct. 17, 2001 Donna - Today I went back to work.  This was very hard for me.  One, because I have a sick child and I wanted to be the one she needed and two, because I never had that alone time with her that I had with Alyssa.  I went back to work after Katie was 2 weeks old, so I was really cherishing this.  I wish I could still stay home but I can't.  Grandma is the next best thing.  They had a good day.


Monday Oct. 29, 2001 Donna - Katie has chemo today and her spinal tap wasn't scheduled.  But after her counts came back they were too low to do the spinal anyway.  They stopped it all until the counts come back up.  Linda came by to talk to us today.  She asked us if anyone had told us about Make-A-Wish.  My first response was that my heart sank and my stomach was in my throat.  I thought that was only for terminal kids, but she reassured me that it was for chronic kids as well. She asked us if it was okay and we said yes.  She said that some parents won't allow their kids to participate.  I can't imagine why, it's a wonderful program.  She choose Disney!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


Monday Nov. 5, 2001 Donna - Her counts were still to low so they sent us home and told us to come back on Thursday.  ( so much for once a week)  They also told us to stop the 6-MP as well.  That is an oral drug she takes daily.  


Thursday Nov. 8, 2001 Donna - Still the same.  Come back on Monday.

Donna - From here on out things pretty much went the same.  Just normal office visits and Karen kept her up to speed on her classes.  She came over at least 2 day a week.  It just depended on how Katie was feeling.

Sometime around late December to early January I noticed that her tubies had a hole in both. So the next time we went in we told them about it and they could only find it in one of them so they had a surgeon come in and fix it.  He just spliced the one that was broke.  A few days later I noticed that the other was still bad and it was bigger.  I called Kevin and had him call the office, and they said bring her in now because Barbara (the Broviac nurse) was leaving soon.  Kevin left work and took her up to the clinic to have it fixed.  Barbara noticed a scratch on her arm that she got at Red Robin (on a table).  She said to have Dr. Levien look at it.  He looked at it and decided to put her on Augmenten, so she wouldn't get an infection.  

Things continued to go smoothly.  The patch job is just temporary for the tubie and it will have to be replaced with a medaport(see below) later.  Her hair was finally coming back when it was time to start "re-induction".  This hit her really hard.  She was tired and sick a lot.  Her hair also fell out really fast this time, and this time she was a complete Q-ball.

Around the last of February or the first of March it was really late one night.  I still had to clean her dressing and I was really tired and was just putting it off.  Finally, I was cleaning her dressing and she looked at me kinda weird.  She told me that her legs were really tired and that she needed to lay down,  so we went to her room.  While I was finishing up she looked at me with a really hollow look and then just SPEWED all over the place. Well, like I said I was really tired and especially didn't want to clean that up.  I had to change sheets, clean the floor, shake out the old sheets, and wash.  That's when I lost it.  I was mad at her, not because she threw-up, but because she didn't say or do anything.  While I was down in the basement washing everything just snowballed on me and I lost it.  The floodgates were open and there was NO chance of stopping it.  I was messed up for about 3 days. I called Moma and balled on her shoulder (long distance), I talked them into coming up here for a visit.  

About a week later Kevin was at work and his chest was hurting so he went to health services and lost it himself. He thought he was having a heart attack.  He talked with Patty for quite a while.  She ran some tests and she said that there was nothing wrong with his heart.  Through the course of talking, she found out about Katie.  She asked how long ago this had happened.  Kevin told her about 6 months.  She told him that you can last about 6 months on adrenaline after something tragic and then you bottom out. (CRASH & BURN) He was better after a few days.  A lot of his problems are at work.  

We  were shooting for after Spring Break for Katie to go back to school.  So Linda gave me a book to give to Mrs. Dragmen for her to use for a child with cancer in her class.  She also gave her a tape to borrow.  The Charlie Brown tape on Leukemia.  Katie was so excited.  She had been out along time.  Well unfortunately Dr. Bringelsen said that after this phase was over her counts probably wouldn't recover in enough time for her to go back after Spring Break.  Sure enough she was right.  2 weeks later she still hadn't recovered.  They decided to put her on Neupogen (count booster).  That was April 19, 2002, come back on the 24th and we'll see.  If all goes well she could FINALLY start her Maintenance Stage.  That starts with a Spinal Tap and Vincristine at the office, and Prednisone, 6-MP, and Methotrexate.  They also gave her the all's clear to go back to school. (YEAH) We didn't leave the clinic till about 2:00p.m.  

We wanted to go to the school to tell Mrs. Dragmen, so we knew we were gonna have to hurry.   We went to Don Pablo's for lunch and got to the school at about 3:10.  We had heard that  different colds and strep were floating around so we wanted to go and find out if it was okay.  At the clinic, they told us as long as it wasn't in her class it was okay.  When we got in, Mrs. Kahl was by the door and she was so excited to see Katie and to know that she was coming back.  She also told us that Mrs. Dragmen had already left.  When we got home, I called Karen to see if she could call Mrs. Dragmen and see if it was okay for Katie to come back.  She said that everything was fine.  

Journal 2
This is a Medaport