July 31, 2009

This morning we went to Children's for Trystan to receive another platelet transfusion. We didn't get out of there until after noon. We came home and Trystan and Alyssa wanted to go school supply shopping at Wal-Mart. So we headed to Vandalia to do a little shopping. The girls had such a blast getting to pick out all of their folders, notebooks, etc.

July 30, 2009

This morning we went to Maryville Quest for labs. The doctor's office called this afternoon to let us know that we have to continue her "super hero" shots and that we are to come in tomorrow morning for more platelets. Apparently, her platelets have dropped even lower than on monday. Even though she received platelets on monday. She was very upset when she found out because she was hoping to go school shopping tomorrow or go to the county fair.

Our sweet little Munchkin.......

July 29, 2009

We again stayed home today. Trystan had a little bit more energy today. She played the Wii with her sister this morning and they played together throughout the day. Trystan also wanted to help me clean the house today. She loves to dust! So she went throughout the house and dusted. The four of us again went for a walk this evening. Trystan again rode in her wheelchair and the rest of us walked. It has been wonderful being able to take her for walks and it not be too hot for her outside.

We will go again in the morning for bloodwork. Hopefully, the two transfusions she received and the continuous shots have helped to boost her counts. We will find out tomorrow!

July 28, 2009

Trystan's still a little pale today and tires easy. We just hung out at the house today. Early this evening the four of us went for a walk togeter. Trystan rode in her wheelchair while the rest of us walked.

July 27, 2009

This morning we went to Maryville to Quest. We came home and while I was preparing lunch, the doctor's office called to let me know that Quest didn't draw enough blood to run the CBC. The nurse asked if we would be able to come down earlier for the doctor's appointment and they would do the labs there. We tried to get there as quickly as we could but only arrived about a half an hour early. They accessed Trystan's port and drew the labs. When the labs came back all of her counts were extremely low. She had to have two transfusions. They first gave her platelets over an hour time, then gave her hemoglobin over two hours. Half way through the hemoglobin transfusion she began to get hives. The nurse had to stop the transfusion and give her benedryl through her IV. After the benedryl was finished she was able to continue the transfusion. The hemoglobin transfusion finished at about 5:35 p.m. The nurse came in and deaccessed her and we were on our way home. Finally! We ate on the way home and didn't get home until a little after 7 p.m. As if Trystan didn't go through enough today we had to give her her "superhero" shot because her ANC is so low. We will be taking her for counts again on thursday.

July 26, 2009

This morning the four of us went to church. It has been a few weeks since the last time we got to go as a family. It was nice to be able to do it. We came home after church and spent the day here. This evening Tracy and myself walked, while Alyssa rode her bicycle, and Trystan was pushed in her wheelchair/stroller. We wanted to be able to enjoy another beautiful evening.

Tomorrow we will be going to have bloodwork done in the morning, then a doctor's appointment at Children's in the afternoon.

July 25, 2009

Today my sister and I took Alyssa and Trystan to the St. Louis Zoo. We had such a good day. We arrived at about 9:30 a.m. It was nice out until after lunch. After lunch the sun came out from behind the clouds and it did get a little warm out. The wheelchair/stroller came in handy to allow Trystan to enjoy the zoo. There would have been no way that she would have been able to walk as much as we did. We stayed inside the zoo until about 3:00 p.m. or so. By then Trystan was pretty tired and ready to go. My sister and I were surprised to see her make it that long.

July 24, 2009

This morning Alyssa and I went to get haircuts in Highland. When we got home we didn't do much else. We hung out at the house, played the Wii, and watched movies. Before we would have looked at this as another boring day. Now we enjoy the "relaxing good" days.

July 23, 2009

Alyssa and I took Trystan for counts this morning. They had to do two finger sticks. By the second one we had a hard time getting it to stop bleeding. When the doctor's office called this afternoon with the results, we figured her platelets were low because of how much she bled. In fact they are low but not low enough to get a transfusion. Her hemoglobin is also getting low but not low enough for a transfusion. The white cells are also low so we will have to continue her "super hero" shots through the weekend. We expect her counts to continue to drop a little more before they rebound. We are due back on monday for bloodwork we also have a doctors appointment that day at Children's.

Don't think that I posted this before, but when we saw the surgeon they told us that her surgery is scheduled for August 7th as long as her counts are good. They said that if either her hemoglobin and platelets are low they will just transfuse those. The only one that she has to do on her own is her white blood cells and total anc.

We cannot thank everyone enough for your continued prayers and support!

July 22, 2009

Today was a much better day for Trystan. I pray that it was the turning point for her. She ate very well and was able to keep everything down! However, before she went to bed she became stuffy and her eyes were watering. I hope that it was just allergies and not a cold. Her counts were low when she left the hospital and normally continue to drop. We will find out tomorrow what her counts are.

July 21, 2009

Before we came home from the hospital today Trystan got sick. She continued to get sick throughout the afternoon. She did however want to eat supper at around 7:00 p.m. We got her to eat a small bowl of chicken noodle soup and it did stay down.

July 20, 2009

Today wasn't much different from the days prior. Trystan stayed in bed pretty much all day not feeling well and again no eating. This afternoon she wanted to go and visit the garden. Alyssa and I put her in a wagon and pulled her and her IV pole outside. She was doing very well and then suddenly felt sick. She did get sick while we were at the garden. We immediately came back to the room. She hasn't gotten sick since. Hopefully, she will have a restful night sleep tonight without any vomitting. As it stands now we are going home tomorrow late morning early afternoon.

July 19, 2009

Trystan didn't eat again today. The last time she ate was friday morning for breakfast, which she ended up losing during her treatment. So technically she hasn't eaten since thursday. She did get sick once during the day today and felt pretty crummy until she went to sleep for the night. Please pray that she may want to eat something soon.

July 18, 2009

Last night Trystan slept better and didn't vomit through the night. She received her treatment today and did alot better. She didn't get sick during her treatment today and hasn't gotten sick through the day. She hasn't eaten anything at all today.

July 17, 2009

Trystan did pretty well last night. She didn't get sick at all. Tracy called on his way to the hospital this morning and asked her if she wanted anything. She told him she wanted McD's for breakfast. He stopped on the way and she ate very well. While getting her first chemo drug though she got sick and lost pretty much everything she ate for breakfast and didn't eat anything else the rest of the day.

July 16, 2009

Today we arrived at the clinic at 10 a.m. We were admitted to her room by about 11:30 a.m. Trystan wanted to go down to the cafeteria for lunch so the four of us went down to eat. We came back and they were ready to start her treatment. Chemo started at about 2:30 p.m. The first drug went well. They only gave her one premedicating drug prior to her second chemo. The second one started about 3:45 and only about 10 or 15 minutes into it she began vomitting and couldn't breathe. The doctors now know that she has to have benedryl prior to treatment along with the hydrochortozone. After the reaction they gave Trystan a big dose of benedryl and she went to sleep and slept through the rest of the treatment.

July 15, 2009

This morning we went to Maryville to have Trystan's counts done and then headed over to see Dr. McDonald. Trystan had to have x-rays done of both of her lower legs today. Dr. McDonald was very pleased to see that Trystan's tumor responded so well to all of the treatments. After her last chemo treatment is done and counts are at a safe level she will undergo surgery to remove the affected parts of the bone. They are planning on using bone out of her left leg and placing it in her right leg along with a plate and screws to hold it in place. The entire surgery will most likely last about five hours. She will then most likely be in the hospital for about five days recovering before coming home. The recovery road will be long and it may be up to six weeks before she would be able to have 100% of weight bearing on her leg.

On the way home this afternoon from the doctor's office we received the call about her counts. She finally made counts for chemo so we will be going in for her last long treatment before surgery tomorrow morning. We will go into the clinic for her port to be accessed and to see the doctor. After that she will be admitted for her treatment. She will be in the hospital from thursday of this week and should come home on tuesday next week.

July 14, 2009

Today was a great day! Trystan and Alyssa had some gift cards and spending money from birthdays, etc. and since Trystan's white cells were good we did some shopping today. It is small things like this that make the good days extra special.

We will be going to have counts again tomorrow morning in Maryville and then heading down to St. Louis to meet with the surgeon. If Trystan's counts are good enough for chemo she should be admitted for treatment on thursday. She will then be in the hospital from July 16th through July 21st.

July 13, 2009

Alyssa and I took Trystan to Maryville for counts this morning. We just received a call from the doctor's office letting us know that her hemoglobin is great, white cells are good, but her plateletts are continuing to drop. They are not yet low enough for a transfusion but not high enough for chemo. Therefore, she will not be admitted tomorrow morning for treatment. We are to discontinue her "superhero" shots because her white blood cells are doing o.k. Wednesday will be a busy day for us. We will have to go for counts first thing in Maryville, then head over to see the doctor that will be performing Trystan's surgery. If Trystan makes counts on wednesday, she will be admitted for chemo treatment on thursday.

July 12, 2009

Alyssa and I went to church this morning. Then we went grocery shopping at Wal-Mart. Trystan and Tracy stayed at home. We will go for counts tomorrow to see if she will be able to be admitted tuesday for her last treatment before surgery.

July 11, 2009

Today was again a pretty good day for us. Trystan still seemed to be a little tired yet today.

July 10, 2009

Today went pretty well again for us. Trystan seemed to be getting more energy late in the day. I sure hope that this is a sign that counts are on there way up.

July 9, 2009

Well, this morning after we dropped Alyssa off at Cheer K Camp we headed for Maryville to have Trystan's bloodwork done. She has been tired all day again, so we were not expecting very good news when the doctor's office called. The doctor's office told us that she didn't make counts for treatment on Monday. Her white blood cell is not bouncing back like after the past short treatments. The good news is her hemoglobin is up and her plateletts are still good. We have to continue the shots through the weekend. We also got a call from the surgeon's office to come in next week Wednesday to go over scans and begin talking about the surgery.

July 8, 2009

Today went pretty good for us. Trystan has been very tired, probably from her counts being low. Tomorrow she will have counts done to see if the transfusion has raised her hemoglobin and if her plateletts and white blood cells are bouncing back yet.

July 7, 2009

We had to be at the clinic in Children's Hospital at 10:30 a.m. It was a slow start. We weren't called back until almost 11 a.m. Her port was accessed by 11:30 a.m. At that time they took blood for a CBC to be run. We had to wait for that to come back hoping that her hemoglobin had come up and she wouldn't need a transfusion. But, it came back and the number had actually dropped so she deffinately had to have the transfusion. The transfusion was started by 12:30 p.m. and was to last two hours. It was finished by then and as soon as the transfusion was finished they flushed her port and deaccessed her and we were free to leave. Poor thing thought she was finished but when we got back to the car Tracy and I had to give her her super hero shot in the parking garage. After that was all said and done we were on our way home and she was really hungry!

Alyssa was still able to attend Cheer K Camp and later in the day got to go swimming at the Greenville public pool with grandma and Kortnie.

July 6, 2009

Alyssa started Cheer K Camp today and will have it all week. Trystan was finally old enough to do it this year but because of her leg she will have to wait yet another year to do it. After dropping Alyssa off at camp, Trystan and I headed down to Maryville for counts. Early this afternoon we received a call from the doctor's office that her Hemoglobin is low and will have to come in to the clinic tomorrow for a transfusion. Please pray that the transfusion goes well and she doesn't develop a fever. Also, please pray for John, Tracy's father. He is having surgery tomorrow morning on his hip.

July 5, 2009

We came home this afternoon from camping. It was nice to be home. Trystan didn't get sick at all today!

I hope everyone had a happy and safe 4th of July holiday.

July 4, 2009

Trystan woke up this morning hungry and ate a pretty good breakfast. We thought we were in the clear of her being sick, but late morning she did get sick. Soon after getting sick she was hungry and ate well the rest of the day without getting sick.

We had to spend the bulk of the day inside the camper because of all the rain. As soon as it stopped Alyssa got on her new bike she got for her birthday, I got on my bike and Trystan got in her bike cart and we went bike riding. It was nice to get out of the camper!

July 3, 2009

Happy 9th birthday Alyssa!!

Trystan woke up this morning and got sick, but throughout the day seemed to feel a little better. Our friends took us out on their pontoon boat early evening and the girls loved it! Thanks Keith and Anita!!

July 2, 2009

Today was a pretty good day for Trystan. Although she didn't get sick today she didn't feel the best. We are leaving today to go camping in the camper for the holiday weekend. This is one thing that both of our girls love to do...camping.

July 1, 2009

Trystan made it all through the night without getting sick! However, she did end up getting sick about 8:30 this morning. We also got to come home today and were home by about 4 p.m. We were all glad to be home. Trystan ate a good supper and also had a snack later and was able to keep it all down. Hopefully she will not have the delayed nausea and vomiting like after the last short treatment.