September 29, 2009

We are all extremely exhausted today from the long night last night. I feel so sorry for Alyssa today. Alyssa was so tired and yet I told her she could go in late to school today and she refused. She wanted to get to school on time! What a good girl she is!! I admire her so much. She loves school!!!

September 28, 2009

This morning we took Alyssa to school then went to Maryville Quest for bloodwork. We received our call about 12:30 p.m. that her platelets were the lowest they have ever been. It was suggested from Children's that we go to Missouri Baptist Children's ER for her platelet transfusion. We arrived at MO Bap at about 3:30 p.m. and were back in a room by 3:45 p.m. The nurse came in to go over some things at about 4:00 p.m. By 4:45 p.m. they finally accessed her port and drew the blood to type and screen it. Told us that it would be anywhere from an hour to two hours for the blood to arrive. They came back in after 6:00 p.m. and drew more blood. Not sure why. They kept coming in and saying the blood was on its way. Finally by 8:45 p.m. the blood arrived and the transfusion began at about 8:50 p.m. The transfusion goes over an hour. After the transfusion was finished we had to have her deaccessed and go over discharge paperwork. We left MO Bap at about 10:30 p.m. and had to stop by my mom's house to pick up Alyssa. After the extremely long day we finally got home at about midnight! Thanks to all of you who continue to pray for our family it means so much to us.

September 27, 2009

This morning Alyssa and I went to church while Tracy and Trystan stayed at home. Trystan was so upset when she found out that she wasn't going to get to go to church. Her counts were too low for her to be able to go. She cried because she couldn't go. After church we ate lunch together. Then the girls played together the entire afternoon and Tracy was outside cutting grass. This evening Tracy went to visit his dad at the hospital.

Tomorrow I am going to take Trystan to get her counts done to see if they've rose. Hopefully, she will make counts for chemo later this week.

September 26, 2009

Trystan was tired and crabby today. We think that it is from counts being so low. Despite being crabby she did learn something new today. She has now mastered the stairs. To go up the steps she uses her good leg and her arms to push her bottom up the stairs. She comes down on her bottom using her arms and good leg as well. We are all so proud of her! She is proud of herself as well. Now she can really get to where she wants to.

September 25, 2009

This morning I took Alyssa to school only this time I stayed. We went on a field trip to the Lewis & Clark Museum. I am not a history buff but it was really interesting. Alyssa and I had a good time. After the field trip we returned to the school. Alyssa had dance practice for Feet of Grace, a Christian Dance Group, and later performed at the Art Walk in Greenville. She did a great job!

Trystan had to stay with Tracy all day since her ANC was only 45. At lunchtime they took a drive to Highland to go to the drive thru at the bank. Then came home after that. Trystan was upset that she was unalbe to go to see her sissy dance. I was sure to record it for her.

September 24, 2009

This morning Trystan and I dropped Alyssa off at school then went to Maryville Quest for bloodwork. We came back home and ate lunch. Just after lunch we got our call from the doctor's office. It was worse than what we expected. Her white blood cells and platelets were extremely low. The total ANC is the lowest it has ever been at 46. However, her Hemoglobin was still good from getting her blood transfusion last Friday. With the ANC being so low we have to watch for any type of fever even low grade. If she were to get even the slightest fever we are to take her to the hospital and they would have to admit her for at least 48 hours. This is to be sure that there is no bacteria in the blood. She will also have to stay until her ANC reaches a certain number. We have met so many families that have spent more than a week in the hospital waiting for ANC counts to rise. Please pray that Trystan's counts would bounce back and that she wouldn't get a fever.

Tomorrow I am going on a field trip with Alyssa! Looking forward to spending time with her.

September 23, 2009

Trystan had a really good day today. She ate and felt well. I hope it continues. We didn't hear about her kidney test today. Hopefully we will hear something tomorrow. Tomorrow is also the day we go for bloodwork to see if Trystan makes counts for chemo on Monday.

September 22, 2009

Today Tracy went to work and I had to administer Trystan's "super hero" shot myself. It normally is both of us teaming up to do it. Tracy normally holds Trystan while I administer the shot. She asked this morning if we could go and eat at Wendy's. I told her that I had to give her her shot myself, but if she allowed me to do it we could go to Wendy's for lunch. She cried and said that she needed Daddy to help her, but said that she would try. When it came time for the shot she did beautifully. I was so proud of her. Soon after the shot we headed to Vandalia to eat lunch through Wendy's drive-thru. We ate in the car and she watched a movie. Hopefully, we will find out the results of the kidney test tomorrow.

September 21, 2009

This morning we had to be down at Children's Hospital by 8:00 a.m. Trystan was not at all happy about having to go down to the hospital again! She had her port accessed for labs first then we were taken over to neuclear medicine. While there they had to butterfly needle in the dye. She also had to drink a very small amount as well. They had to then periodically at timed intervals draw labs from her port over a four hour time period. She refused to eat the entire time we were there because she didn't want to eat at the hospital. The test was finished by a little after 1:00 p.m. and she was deaccessed by 1:20 p.m. and we were on our way home in time to pick up Alyssa from school. We were told that we will not get the results from the test until sometime on Wednesday. We also got the results of Trystan's counts while we were at the hospital and they were all still good. We are still to giver her her "super hero" shots at least until Thursday. On the way home Trystan started to tell us that she was wanting to eat something but instead ended up getting sick. We arrived home at 2:30 p.m. Trystan and I then went into town to pick up Alyssa from school. On the way back home Trystan decided for sure she wanted to eat a snack wrap from DQ. She did eat a good late lunch. She also ate a good supper and was able to keep all of her food down.

September 20, 2009

Today was a turnaround day for Trystan. She was able to eat and keep it down today. Hopefully this will continue. Tomorrow is a test at Children's Hospital to be sure Trystan's kidneys are still functioning correctly and haven't been damaged from the chemo.

September 19, 2009

Trystan woke up this morning doing a happy dance singing "I get to go home today!" Over and over. We got home this morning by 11:45 a.m. Trystan got sick as soon as we got home but later decided she wanted to eat lunch! She ate a good lunch, but later in the after noon did get sick again. This evening she did eat an awesome supper! Thank you all of praying for her appetite to come back. I am hoping that it continues.

September 18, 2009

Today has been a long day. Trystan's chemo began at 9:30 a.m. this morning and ended about 11:45 a.m. During the first chemo drug Trystan got sick twice, but didn't get sick during the second one. While the chemo was going, we were told that Trystan's hemoglobin was low and she would need a blood transfusion. The transfusion was started in the after noon and last about two hours. Shortly after the transfusion was finished she did get sick again. Trystan has continued to get sick off this afternoon and evening.

Tracy and Alyssa came down to the hospital this evening. My sister Carrie also came down. The five of us went out to the rooftop gardent to see the hot air balloon glow in Forest Park. We were so happy that Trystan wanted to go out and see them. It was awesome.

The other excitement of the day is Trystan lost her other front tooth!

Pictured is Trystan posing after losing her other front tooth today.

September 17, 2009

Trystan has been sick off and on throughout the entire day. She hasn't eaten since Tuesday morning. I've learned not to worry about it, that she will eat when she is ready. But I'm not saying that it doesn't bother me. Tomorrow morning will be her last day for this round of chemo. Then she will have 24 hours of hydration.

September 16, 2009

After posting last night how well Trystan was doing we hit a bump in the road. Trystan began complaining that her right leg was hurting. It was huring her so badly she was screaming and crying in pain. After taking some tylenol and about an hour the pain stopped. Following all of that excitement she did sleep o.k.

This morning Tracy dropped Alyssa off at school and headed down to the hospital. He came up to meet Trystan and I to walk over to see the surgeon. Our appointment was at 9:30 a.m. and we arrived at 9:20 a.m. They sent us over for x-rays right away. We got back over to clinic by 9:55 a.m. Then the wait started. We finally got called back at about 10:40 a.m. The doctor came in and showed us the x-rays and said that everything looks good, just as it should. After seeing the doctor we went back to the casting room to have her splint cast removed. The doctor came back in to look at her incision and the blister on her heel. The spot is still on her heel, but he thought it looked better. Guess what! She finally got her purple cast!!

We got back to her room at about 11:45 a.m. Just in enough time to start her premedications at noon. Chemo then began at 1:00 p.m. She got sick a few times this afternoon and this evening. Trystan has not eaten anything today and doesn't have the urge to want to eat anything as well. Maybe tomorrow.

This picture was taken right after Trystan had her new cast put on.

September 15, 2009

This morning Trystan woke up in a good mood. She even ate a late breakfast! This is great considering she normally doesn't eat anything after chemo starts. Normally when she does eat, she gets sick. Thank goodness that has not been the case today! She has kept her breakfast down so far today. Although she hasn't eaten anything else but breakfast, we are thankful that she ate that and has kept it down. Two days of chemo down and three more to go! Tomorrow we have to go over and see Dr. McDonald at 9:30 a.m. to have them take off the current splint cast she has on and hopefully she will get a regular cast. We hope that she will soon be able to use crutches but don't think that it will happen tomorrow.

The pictures are of Trystan playing with the stickers she got from the clown doctor, Dr. ICU.

September 14, 2009

This morning we dropped Alyssa off at school and headed to Children's Hospital. We arrived at the clinic at 9:30 a.m. The nurse accessed Trystan's port and drew labs to make sure that her platelets were high enough for chemo. After getting the go ahead we were admitted to the floor. While waiting for her urine to be diluted enough to receive chemo Trystan started coughing and got sick. We were so surprised since she hadn't even had any chemo yet. After her stomach calmed down she wanted to take a walk down to the garden. She got to make some wishes in the ponds. When she was finished in the garden we went down to the gift shop. We wanted to get her a balloon, but when we got down there she decided she didn't want one right now. A man inside the gift shop saw her and gave her a $20 gift card to the gift shop! He told us that if she didn't want to spend it that she could share it with someone else. Nine years ago his son had a brain injury and had to spend a long time in Children's. They were here for a check-up. I cried when he left. I couldn't believe a man whom we have never met or seen before gave Trystan a card to buy what she wanted from the Gift Shop. God does amazing things and has us to cross paths with strangers that will touch our hearts!

We came back up from the gift shop and Trystan was finally ready for chemo. But first we had to take a trip back down to the Heart Station to be sure that all of the chemo hasn't damaged her heart. This is a continuous check they do periodically. She finished down there and we came back up to say good-bye to Daddy and to start the chemo. They premedicated her and it put her to sleep. She slept through the entire treatment. Once she woke up, she's been very quite. I'm not sure she's feeling very well. She didn't get sick during the treatment and it's been a couple of hours and she still hasn't get sick. Hopefully, she will continue to not get sick. I am hoping that tomorrow she will feel well enough to eat.

The picture is of Trystan and her Barbie she got from the prize closet in the clinic.

September 13, 2009

This morning we got up and went to church as a family. Not only were we there but Grandma and Grandpa Watson were able to come as well! After church we came home to eat lunch. The rest of the day we spent preparing for the upcoming week. Packing clothes for the hospital and picking out clothes at home for Alyssa. Please continue to pray for Trystan throughout the week as she receives her second round of treatments.

September 12, 2009

This morning Alyssa and I ran into town to do a little grocery shopping. After lunch we went to Carlyle to their Street Fest. The group of young adults that are being confirmed had a stand there and invited us there to have a picture with them. The profit they make from their stand they are wanting to donate to Trystan. It absolutly touches my heart that these young adults are giving to a little girl whom they don't even know. Thank you for your kindness!

September 11, 2009

We had a good day today! Trystan's cough seems to be getting a little bit better everyday. Thank you all for your continued prayers.

September 10, 2009

Trystan and I took Alyssa to school this morning and again headed to Maryville Quest for labs. She was not at all happy that she had to have blood drawn from her arm instead of a finger stick. Today it took two ladies and myself to get it done. Just before leaving to pick up Alyssa the doctor's office called to let us know what Trystan's counts were. Her hemoglobin is climbing, white blood cells were great, and her platelets have come up. Her platelets are supposed to be at least 75 for chemo and were 70. Since they are showing that they are finally climbing they are figuring they will be well above 75 by Monday. Therefore Monday morning they would like for Trystan to come in to the clinic Monday at 9:30 a.m. for bloodwork. As long as her platelets are above 75 and the rest of her counts remain good, she will be admitted then. It will be a five night six day stay. We should be discharged Saturday late morning early afternoon. Please pray that her platelets would continue to rise and the rest of her counts will stay good.

September 9, 2009

Today seemed to be a good turning point for Trystan. She finally ate pretty well today! Her cough is still there but we think that it's getting better. Even though she's still in chemo her eyebrows, eyelashes, and hair seemed to be growing back! We don't know if it will stick around through the rest of her chemo but for now we're excited for her. We will be going for counts again tomorrow. If all of her counts are good she will be admitted for chemo on Tuesday of next week and be in for five nights and six days.

September 8, 2009

This morning Trystan and I dropped Alyssa off at school and headed to Maryville for counts. Trystan's friend Mary was back at Quest to do her finger stick. She was happy that she was back from her time off from surgery. The finger stick went fine and she bled quite a bit. We got the call from Children's on her counts just before leaving to get Alyssa from school. We were told that her white blood cells were good and to not give a shot today but to go ahead and give her one tomorrow morning. Trystan's hemoglobin was still good as well. However, her platelets have dropped again. They are still not low enough for a transfusion but are too low to receive chemo. Therefore we will not be going in on Thursday for treatment but will have to get counts again then. She is now temporarily scheduled for next week Tuesday if she makes counts. When Tracy asked Trystan if she was happy that she didn't have to go and get chemo on Thursday, she told him that she really just wanted to get them all over with so that she could be done! Amen to that!!

September 7, 2009

We came home from camping today. I think overall the girls really enjoyed themselves even with the rain! We continued with the same routine as yesterday; shot and medications. I am so glad we went ahead and camped this past weekend. It did a lot of good for both the girls as well as for Tracy and I. Trystan seems to be doing really well today. She hasn't coughed very much at all and seems to have a bit more energy as well as an appetite. We will find out tomorrow what her counts are and if they are high enough for chemo. If she does make counts she will be admitted on thursday for chemo and will be released on tuesday of next week.

September 6, 2009

We began our morning again with a shot and medication. She did seem to sleep better than the night before. Whether we had bad weather or not, Trystan's favorite thing to do while camping is just to hang out in the camper watch movies and play inside. I did get her to go out into the open grassy area and Trystan, Alyssa, and Cade played with a playground ball together. She even ate a little bit better than yesterday. We are hoping that her counts are getting better and her body is being able to fight off the bronchitis.

September 5, 2009

This morning we woke up and had to give Trystan her "super hero" shot along with her antibiotic, mucinex, and inhaler. She seemed to eat a little better than yesterday. She is still coughing quite a bit though. We had to spend much of the day in the camper because of the rain, but lucky for me I was prepared for it! I was sure to pack a lot for the girls to do in case of bad weather. Late in the day the weather finally broke and they were able to go outside. Even though Trystan was in her wheelchair, we went for walks and she was able to play out around the camper.

September 4, 2009

We've decided to go camping for the holiday weekend. The camper is a controled environment just like at home plus she will be able to have some fresh air as well. We are hoping that her eating will increase a little over the weekend as well as begin to feel better.

September 3, 2009

Throughout the night last night Trystan cried and expressed that her throat was hurting. Most of the time she was doing it while she was sleeping. Tracy and I decided that maybe she shoud go back to the doctor to have her throat looked at. We were thinking that it might be strep, mouth sores from chemo, or thrush. She wouldn't eat anything for breakfast. After dropping Alyssa off at school this morning we headed to Maryville for counts. She was not at all happy about having to have a needle stuck in the arm instead of a finger stick. We came back home from getting counts and I tried to get her to eat some lunch. She ate very little because her throat was hurting so badly. I had gotten an appointment for her at 2:00 p.m. so we left the house to go into town. The doctor looked into her throat and said that it still just looked like drainage. We are to continue to give her the antibiotic, inhaler, zyrtek, and singulair and to start up with children's mucinex. After the doctor's visit we ran over to the school to pick up Alyssa and Trystan's homework. Children's called to tell us what Trystan's counts were. It was just as we expected her hemoglobin was good, white blood cells and platelets were way too low. We are to continue to give her her "super hero" shots. Her total anc is very low as well. Since she is sick with the bronchitis we have to really watch her to be sure that she doesn't get a fever. Her body really can't fight this infection with her white counts as low as they are. Please continue to pray for our little Trystan.

September 2, 2009

We thought that Trystan was getting better today, but by the end of the day she was complaining that her throat was hurting. She still didn't eat very well today. She has lost so much weight since her surgery. We will be going for counts tomorrow.

September 1, 2009

Today Trystan seemed to be a little better. She didn't get sick at all throughout the day and was able to eat just a little. We have still had to give her her super hero shots and will continue them until her counts are at a safe level. Please pray that her appetite would return and that she would feel better soon.