May 31. 2009

Well, we said our goodbye's to Alyssa this morning as she was off with her aunt and uncle for vacation. It was hard for all of us to tell her goodbye. She has never been gone from all of us for that long of a period of time.

Trystan has been sick all day today. She has not eaten at all and has drank very little. Not only is vomiting a side effect of the chemo but one of the drugs also can cause jaw pain. She has been having alot of both today. Please pray that Trystan that tomorrow will be a better day with little or no vomiting and that she would have an appetite and be able to eat.

May 30, 2009

Well, we thought we were in the clear because she ate pretty good yesterday. But, a little after nine last night Trystan got sick. The good news is that she slept through the night and hasn't gotten sick again since then. She ate a good lunch and supper today. She wants so badly to be able to play but gets worn down very quickly yet.

Alyssa is going on vacation with her Uncle Tim, Aunt Lori, and Cadence. She is so excited! Trystan is sad to know that sissy will be gone for almost a week.

May 29, 2009

At about 4:30 a.m. this morning, Trystan got sick. But through the day today she has eaten pretty good and been able to keep it all down thus far! Also, Surprise! They are going to allow us to go home tonight after her treatment. There isn't any required hydration after this particular chemo drug. She will receive this treatment at about 6:30 p.m. over 15 minutes and we should be on our way home soon after that.

May 28, 2009

Trystan is finished with her first day of treatments and so far she is doing well. She ate well today.

May 27, 2009

Today since Trystan's counts were up she decided to go to school as a kindergartener one last time! When we were walking out of the school doors Trystan said look mom a turtle. I turned around to find a pretty good size box turtle. The secretary, Mrs. Simmonds, gave her a box and we brought "Cheetah" home with us. We kept him on the front porch in the box and gave him slices of an apple and some water. She checked on him a few times during the afternoon. When we were walking out to the car to go and pick up Alyssa from school, we looked in the box and he was gone! He somehow climbed out of the box and got away. Oh well, he has plenty of places to go around here. We are now packing for the couple of days we will be at the hospital.

May 26, 2009

We had to go and get bloodwork this morning to find out if Trystan's counts were high enough for treatment. God has again answered prayer! Her counts have stayed high enough and we are to report to the clinic at Children's on thursday morning at 9:30 a.m. She will then be admitted for treatment. If all goes as planned we should be home one saturday May 30th.

May 25, 2009

I pray that everyone had a safe Memorial Day Holiday!

May 24, 2009

Today was such a blessing. We all went to church together. This is the first time we have been back to church together as a family in about a month!

May 23, 2009

Today has been a good day! Trystan went to her friend's birthday party this afternoon and had a great time. It was comforting to see her with all of the other kids and being able to be out with her friends.

May 22, 2009

Trystan again went to school today for a few hours. It was one of her wishes that her Uncle Buddy (Russ) bring his police car to school. He did that for her today. She had a blast! Today was most likely her last day of the school year. She went around and got pictures with a few of the teachers, friends, and Mrs. Simmonds (the secretary). It was a great day!

Praise God...one giant hurldle jumped.....

We found out that in theory, our insurance company has decided that we DID NOT lie on our application and that Trystan's cancer was NOT a pre-existing condition. The hospital contacted us and stated that our account is no longer flagged as having an insurance problem and that they have started to pay. Thanks to everyone who has been praying for this to be resolved, it a huge weight taken off of our shoulders!!

May 14, 2009

Since Trystan's total anc counts were great, she decided she wanted to go to school today. She stayed for a couple of hours. She was so excited to see all of her friends and they were excited to see her too! We left at lunchtime to go and pickup a wheelchair that one of my brother (Kirby) friends daughter outgrew. We are planning on using it after she has surgery. It is her favorite color, purple! Thank you Craig and Laura, God bless you!!!

Taking refuge in the arms of God.......

May 20, 2009

Received a call from the doctor's office regarding Trystan's counts taken this morning. She still did not make it for chemo. Her platlets were at 55 and needed to be at least 75 to get treatments. On the bright side however, we can discontinue her shots. All of the rest of her counts are great! The plan now is to go in on Tuesday for counts again. As long as the platlets continue to rise and the rest of her counts stay up we will be admitted next week thursday. The stay should be through saturday, May 30th.

May 19, 2009

Today our prayer is that Trystan's Hemoglobin, White Cell, & total ANC stay high enough. But also that her Platlets climb back to a safe level so that she doesn't have to have a transfusion and is able to get in for her treatment. Counts are going to be done tomorrow morning.

May 18, 2009

Again this morning Trystan and I took Alyssa to school. She is on the countdown to the end of the year! After dropping off Alyssa, we were again on our way to Quest in Maryville. Trystan got her finger stuck and bled pretty badly today. I pray that her counts are not low, but it didn't look promising how much she bled just from a smally finger stick. The results of her bloodwork weren't all bad. The only thing that was low was her platelets. But since they were low we cannot be admitted for treatments tomorrow. We are to skip giving the shot tonight and resume with the shot tomorrow morning and go for bloodwork again on wednesday.

May 17, 2009

This morning Alyssa and I went to church and Tracy stayed at home with Trystan. She ate very well again today. When Alyssa and I got home from church we all ate lunch and later went outside to enjoy the nice weather! Tracy decided to take the girls out for a ride on the four wheeler. They really seemed to enjoy it! Thank you all for your continued prayers!!

May 16, 2009

Still no fever! Horray!! Still eating very well.

May 15, 2009

Tracy, Trystan and myself dropped Alyssa off at school and headed for Children's Hospital. We arrived there and they began the transfusion. All seemed to be going well. The nurse periodically checked her vitals and temperature. If she were to get a fever while we were there she would be immediately admitted and observed for approximately 48 hours. Thankfully, with all of the prayers, we are happy to report that she did not get a fever! We were able to go home after the transfusion was completed.

May 14, 2009

This morning after we dropped Alyssa off at school we headed to Maryville for counts. Trystan seemed to be doing so well! We got the call from the doctors office late in the afternoon and her counts were extremely low and were told she would need to get a blood transfusion for her hemoglobin. We were to report to the doctors office by 10:00 a.m. friday morning.

May 13, 2009

Appetite is coming back in full swing! We are so excited!!!

May 12, 2009

We got the call from the doctors office about Trystan's counts. They said they were good and to discontinue the shot today but to start them back up tomorrow. I asked if her counts were high enough for her to attend her sister's choral concert and they said yes! We were so excited to be able to take her out and to hear her sister sing. When we arrived at the concert, they were doing a benefit for Trystan. Each class in the grade school made up baskets to be sold and someone donated an electric razor scooter to be raffled off. The teachers asked Trystan if she would like to go up on stage and pull the winning ticket. She was so excited to get to do it. We are so proud of both of the girls. Alyssa sang beautifully and Trystan was so brave. All of the baskets sold and to date, the school raised $1781 for our family. Thank you GES and Community! God is so good!!!

May 11, 2009

This morning Trystan was still sick to her stomach. Later that day I took her to get her bloodwork done. On the way home she asked if when we got home if she could have some Chicken Noodle Soup. When we arrived home she ate about 3/4 can of soup over an hours time. This is a great start!

May 10, 2009

Before we got to go home today Trystan had to receive the same shot that is administered at home. She did not want the nurse to give it to her. Instead Tracy and I gave her the shot. After the shot was given we were given our discharge papers and were free to go. Tracy went ahead down to get the car to meet us. We were on our way out the door and she saw her roommate eating a piece of cake and got sick. Finally, I put her in the wheelchair and we were out the door. She slept most of the way home. Trystan still ate nothing today.

May 9, 2009

Trystan ate nothing again today and still gets sick with the site, smell, or thought of food. We cannot even eat inside the room with her. This is a challenge especially since she has a roommate that is able to eat. Today's treatments went great! They premedicated her and she slept throughout the entire treatment which made it much easier for her. We should get to go home tomorrow!

May 8, 2009

Trystan got another roommate this afternoon. She is a ten year old and is here for her very last treatment! Her treatments have been going on for a little over a year. Trystan didn't eat anything throughout the day today. The thought, smell, or sight of food physically makes her sick! Poor baby. They are going to go ahead with the treatments today. There is no problem with the first medication. They have decided to premedicate her before the second medication with benedry and hydorchortizone. She did throwup during the second drug but no other reaction. Praise God!!!

May 7, 2009

Her little roommate went home today. She now has the room to herself! Trystan ate a good lunch today and had a snack in the afternoon a few hours before her treatments were to begin. She sat on my cot/bed and colored/played while the treatments were being given. About a little over half way through the second drug she began to vomit. She was having trouble breathing and her eyes, nose and throat were itchy and irritated. We now know that she has an allergic reaction to this drug. That was so scary! They stopped the infusion and began to give her benedryl to stop the reaction. Unfortunatly after this happened she didn't eat for the rest of the evening.

May 6, 2009

Trystan continued to eat well today and her treatments went well too. The little baby that was in the room with her may be able to go home tomorrow!

May 5, 2009

We arrived at Children's Hospital and were to first report to the clinic. They accessed her port and drew blood from her port and started an IV. We were then off to the inpatient side of the floor. We again arrived and had a roommate, but within the hour she was discharged. Trystan had a room to herself or so we thought. By the afternoon, she had another roommate. He was a ten month old little boy. They began treatments on Trystan late in the afternoon. The treatments went great and she ate great too!

May 4, 2009

Went again this morning for counts. If they come back high enough, Trystan will be admitted for second treatments tomorrow. We received a call in the afternoon that her counts were good and to come in tomorrow for treatment! This next stay would be for five nights and six days.

May 3, 2009

After being in the ER all night. Her bloodwork came back and her counts were high enough. They didn't see any reason for her to have to be admitted and her fever came down on its own. Because her counts were high enough we were told to stop with the shots. We arrived home at 7:30 a.m.

May 2, 2009

Alyssa had her dance recital this evening. Trystan was unable to go because her counts are still low. Grandma and Grandpa Watson came over to sit with her so that Tracy and I could both attend the recital. Alyssa danced beautifully! Upon coming home from the recital we gave Trystan all of her meds and her shot. She felt warm. I continued to take her temperature for about an hour. I called down to Children's and they told us to bring her to the emergency room. When your counts are low your body has no way to fight infection, this can be very dangerous. We left home around 10:30 p.m. for Children's. They accessed her port and gave her an IV and took blood to check her counts and culture the blood for bacterial infection.

May 1, 2009

Trystan's counts were still not up to what they should be. We have to continue the shots through the weekend.

April 30, 2009

This afternoon we went to get Trystan's counts done at Quest. Mary is the person that Trystan sees every time she goes and is able to get the blood through the finger stick. We will find out what the counts are tomorrow! I had to give her her shot again this evening.

April 29, 2009

Finally at about 8:00 p.m. the shots were delivered to our house! Bond County Home Health came out to our house to be sure that I could administer the shots. Betsy was wonderful. She took us through step by step on everything we needed to know and do. And at 8:35 p.m. I administered Trystan's first shot. I was scared to death! But God gave me the strength and courage to do it!

April 28, 2009

Today we got the call that Trystan's counts were very low. We would have to begin shots at home that would help to boost her white blood cells and I would have to be the one to administer them.

April 27, 2009

We went today for counts, but this time we went to Quest in Maryville. They have agreed to do the finger stick. She was so brave!

April 25, 2009

Appetite is back in full force!

April 24, 2009

Trystan ate only a little today, but praise God it was something and it stayed down! She ate only a little of McDonald's breakfast. By noon she wanted me to make a frozen pizza. Trystan ate the pizza and some chips.

April 23, 2009

God is answering prayers everyday! Today Trystan ate a little more. She wanted chicken noodle soup at 10:00 a.m. Tracy and I had to take her for counts today. We decided to take her to Greenville Hospital to have them done. We arrived there and found out that everytime we go for counts we have to register her. After waiting for a half an hour to register we were on our way to get the bloodwork done. Now when we were discharged from Children's they told us that when we get counts done all they should have to do is a finger stick. There was no reason to draw it from her arm. When we were finally called back to have the bloodwork done, the lady refused to do a finger stick. So I gave in and let her draw it from her arm. BIG mistake. The lady had to stick my poor baby twice! As we were leaving the parking lot, we promised Trystan she wouldn't have to go back there again for bloodwork. We would drive down to Children's twice a week for bloodwork if we had to. She wanted to rent a couple of movies on the way home and wanted to go to DQ for a hot dog and fries! She ate almost the entire meal. At 2:30 p.m. she was wanting to eat again. This time she ate a corndog and chocolate milk. AMEN!!!!

April 22, 2009

Trystan decided she wanted to try to eat something today at about 11:00 a.m. She wanted a lunchable. She ate some of the bologna, 1/2 chocolate chip cookie, a few chips, and little bit of a capri sun. Though that was all she ate today we were so excited that it was something!

April 21, 2009

Trystan continued to get sick off and on throughout the day and still did not have an appetite to eat.

April 20, 2009

Trystan got to come home today! She was still sick to her stomach and didn't eat anything again today.

April 19, 2009

Just after midnight Trystan began to vomit. She got sick a few times. She ate nothing today and got sick a couple of times throughout the day.

April 18, 2009

Trystan ate no breakfast and very little for both lunch and supper. She finished her treatment today. The treatments have begun to make her sick to her stomach.

April 17, 2009

We had to arrive at Children's Hospital by 6 a.m. for Trystan's surgery. Alyssa stayed with her Uncle Tim and Aunt Lori the night before so they could take her to school for us. While she was in surgery they also did a bone marrow biopsy. Both the port and the biopsy went well! Trystan woke up from this surgery so much better. After waiting for a room on the Oncology floor for about three hours, we were on our way upstairs. We arrived in our room. At first we had to share a room with a 15 year old girl who just was also diagnosed with Ewing Sarcoma. Her's was in her arm but had also spread to her chest. Later that same day the other girl was moved to her own room, now Trystan had a room to herself. Her first treatment began late that evening. It went fine.

April 16, 2009

Again the school was nice enough to supply Trystan with the wheelchair. She only made it a half of a day today.

April 15, 2009

Doctor appointment with Dr. Wilson to discuss what to expect with chemo and the rest of Trystan's care. He also gave us a tour of the clinic and inpatient areas. Dr. Wilson told us we were to come in friday morning for surgery to put in her port. After the port sugery is finished she will be admitted for her first round of chemo. She will be in the hospital thru monday April 20th.

April 13, 2009

Had to contact Marsha at Cardinal Glennon to let them know that we decided to get treatments for Trystan at Children's Hospital.

April 12, 2009

Today was Easter. We went to church then to Tracy's mom and dad's house for lunch. They hid easter eggs for the kids. We pulled Trystan in a little red wagon to hunt the eggs. She tired very easy today.

April 11, 2009

Trystan got to go to a friend's birthday party at the Globe Theater today. she wasn't at all happy that she had to keep the bandage on her leg.

April 10, 2009

Went into Children's Hospital for a biopsy on Trystan's leg. She got to pick out what flavor she wanted to smell when they administered the gas. She chose rasberry. Her nurse came in to introduce himself. He was funny and connected well with Trystan. The doctor had come in and wrote on the leg that was to be biopsied. After he left Trystan was trying to rub it off. It made her mad that he wrote on her leg! The male nurse asked her if the doctor wrote on her. She said yes. He asked her if she wanted to write on him. He gave her a pen and opened his hand and she began to write on his palm. When she was finished he looked at his hand, smiled and showed us what she wrote. She spelled "L-O-O-S-R" I couldn't believe it! We apologized to him he laughed and said no problem. It was now time for her to go. Tracy gave her hugs and kisses. Then it was my turn. I teared up. She saw me upset and she began to cry. The doctor later came in to tell us the preliminary results showed that it was Ewing Sarcoma. We couldn't believe it! Dr. McDonald needed to know what we had decided on where she was going to get her treatments. We told him our decision was to stay with Children's. Dr. Wilson then came in to introduce himself to us and to let us know we should come to the clinic to see him on Wednesday, April 15th. His secretay would call us to let us know what time to come.

April 9, 2009

Trystan was so excited to be able to go to school today. The school was kind enough to get a wheelchair for her to use while there.

April 8, 2009

Went in to see Dr. McDonald. He sat down with us and told us what the results were of the CT Scan and MRI. The CT Scan was of her chest and it was clear! This was great news! The MRI showed him that it was a tumor and that a part of the bone had some spots in it also. He thought that by just looking at the MRI it looked to be Ewing Sarcoma. But he didn't want to label it for certain until he could do a biopsy of it. He couldn't go over the results of the Bone Scan because he didn't have anything from Cardinal Glennon. The biopsy was scheduled for Friday, April 10th. We were very happy with the visit we had with Dr. McDonald and Kelly his head nurse. We asked thm about the posibility of having treatments at Children's Hospital. He said that either way we would get good care. We were to go home and talk about it and if the biopsy came back cancerous we would need to make our decision right away.

April 7, 2009

Returned to the Costas Center this morning for the bone scan. Found out that Cardinal Glennon does not do bone scans and we would have to go to SLU Hospital to have it done. We were taken over to register at SLU. The wait to register took about an hour to an hour and a half. We were finally taken to the bone scanning area. Yet to wait again! Finally we were called in to see someone that was to explain the bone scan to us. He took us into a filthy room, closed the door, only to see a huge dead cochroach on the floor! An unpleasant woman then came in to inject the dye. We were then to go back to the Costas Center and wait for a few hours. We were told to return back for the scan at 1:30 p.m. We were finally taken back and the head nurse, Marsha, asked how the bone scan went. She was surprised to hear Trystan had just now been injected with the dye and we were gone there a long time. While waiting in an exam room Trystan became very warm and tired. She went to sleep on the exam table. I had to hunt someone down to find her nurse Marsha to tell her about Trystan. Marsha came in and placed a thermometer slip under Trystan's arm and left the room. Finally after 15 minutes she popped her head back in to see how we all were doing. I had to remind her about the thermometer. She took it out and said, "Oh my goodness! She has a temp of a little over 103!" I asked then if she was reacting from the dye and if I could give her motrin. Marsha told us she needed to call over to SLU Hospital to see about it. While we were waiting for her to return, Dr. Ingle (surgeon) came in to talk to us. She told us that Cardinal Glennon did not have a surgeon for tumors. They were referring us to Dr. McDonald at Children's Hospital. They also told us that he was the best in the St. Louis area. We had to call to schedule the appointment on our own and deliver the results of the MRI and CT scan to him ourselves. Which by the way, no one at Cardinal Glennon went over the results of these with us. While still waining for Marsha to come back to us about the dye and motrin, I began trying to call Dr. McDonald's office about setting up the appointment. After many attempts and no one answering and no voicemail picking up, Tracy calledhis contacts at Wash U for help. Dr. Ingle gave us the wrong phone number! After getting the right phone number, we were told by Dr. McDonald's office to come in the following day at 12:30 p.m. It was now 1:30 p.m. time to be back for her scan and still no Marsha. I went to the front desk and asked for her and also asked again if I was able to give Trystan motrin/tylenol. I was finally given the go ahead to give her the motrin after now running the 103 temperature for about two hours! We were escorted back over to SLU to do the bone scan. The young lady conducting the scan wasn't pleasant at all. After Trystan did great laying still the lady told us Trystan's bladder should have been emptied before the scan. She would need to go empty her bladder. They redid that part of the scan. The escort returned to take us back to the Costas Center. Upon our return Marsha retook Trystan's temp and it was down to about 100 degrees. Another one of the doctors in Hemotolgy/Oncology department looked Trystan over and said she was probably coming down with a cold. Our thoughts were you don not run a 103 fever with a cold! We also asked that day if we were going to get the results of the previous days scans but no response.

April 6, 2009

We arrived at the Costas Center. We had to wait to be worked in for an MRI and CT Scan. At about lunchtime we finally got in for a CT Scan. The scan didn't go well because Trystan was still upset from getting her IV. She cried thru the scan. The nurse giving the scan said they would have to redo the scan after she was put to sleep for the MRI. They put Trystan to sleep thru her IV line. After the MRI they redid the CT scan. She woke up the the anastesia very well.

April 4-5, 2009

Trystan ate much better! We were told to give her tylenol and motrin for pain.

April 3, 2009

Trystan again wouldn't eat breakfast and was still complaining that her leg hurt. Tracy and I decided that I should call the pediatrician. Took her to see the doctor. She sent us to Greenville Hospital for bloodwork and an x-ray. A few hours later she called to tell us it looked like it could be an infection in the bone, a cyst, or a tumor. We needed to go to Cardinal Glennon Emergency Room right away. We arrived at Cardinal Glennon E.R. and they took an x-ray of her leg and chest. They also took bloodwork. By looking at the x-ray they said it looked like a tumor. We were sent home and told to arrive at the Costas Center on monday morning.

April 2, 2009

Throughout the day at school she cried that her leg gurt and continued to limp. She didn't eat hardly anything all day.

April 1, 2009

This evening during AWANAs, Trystan strated to complain that her leg hurt and she wanted to be carried.

March 31, 2009

When I picked Trystan up from school I noticed she was walking funny. I asked her why she was walking that way and she said she didn't know.