Grant has shown much improvement in the last couple of days. His desire to do the things that he used to do has returned. He is wanting to jump off of steps and out of the car. He is doing a lot more running. Again, he is still limited by lack of strength and energy, but, thankfully, the desire to be him is there. He and Trent are having a lot of fun together. Trent is really communicating more and he and Grant just laugh all the time.
Grant is eating more "normally" and he is sleeping better. Both of the boys took some good naps this weekend. So, Rudy and I snuck one in too. We have both struggled with headaches this weekend, but I think they are from fatigue.
We will have more direction for the next few weeks after Grant's appointment on Tuesday. We will keep you posted.
Sunday, May 31, 2009
Friday, May 29, 2009
More Good News
All of Grant's test results came back and he has NO leukemia in his body. We had received this report earlier on Day 8. However, this time they do an additional test, minimal residual disease (MRD), which detects numbers of leukemia cells that are too small to be seen by human eyes. So, this means there is ABSOLUTELY NO leukemia. Dr. Heym has been extremely pleased with how Grant has responded to the treatment he has received. He is considered a "Rapid Early Responder". Dr. Heym was also thrilled that Grant did not have to come back to the hospital to receive antibiotics for infection since we left the hospital.
I had a very informative phone call with Dr. Heym today. After relaying all of that information to Rudy, we will be meeting with him again at Grant's appointment on Tuesday. At that point we will be making some big decisions on the next steps in Grant's treatment.
Grant seemed to show a little improvement today. He wanted to be more active and attempted much more physical activity. He was not able to do a lot of things, at least not the way he is used to, and that frustrates him. He is still really struggling with going up the stairs. But, he was busy all day and went out and played frisbee with Rudy tonight.
His appetite actually tapered off a little today. He did not devour everything put in front of him. And he actually ate very little dinner. They told us that coming off the steroids could possibly make his appetite dip lower than it was when we started all of this. We are beginning to find out that we are not going to be able to establish any kind of normal. Things are and will be continually changing. We are just going to have to try to keep up.
I had a very informative phone call with Dr. Heym today. After relaying all of that information to Rudy, we will be meeting with him again at Grant's appointment on Tuesday. At that point we will be making some big decisions on the next steps in Grant's treatment.
Grant seemed to show a little improvement today. He wanted to be more active and attempted much more physical activity. He was not able to do a lot of things, at least not the way he is used to, and that frustrates him. He is still really struggling with going up the stairs. But, he was busy all day and went out and played frisbee with Rudy tonight.
His appetite actually tapered off a little today. He did not devour everything put in front of him. And he actually ate very little dinner. They told us that coming off the steroids could possibly make his appetite dip lower than it was when we started all of this. We are beginning to find out that we are not going to be able to establish any kind of normal. Things are and will be continually changing. We are just going to have to try to keep up.
Wednesday, May 27, 2009
DAY 29
Yay! We finally made it. Today was a really tough day though. I'm not really sure how to put all the events and the emotions of the day into this blog. There were a lot of things going on, a lot of waiting, a lot of trauma, a lot of new information. I don't think we were really prepared for the day to be as exhausting as it was.
Grant struggled through all of the things he had to do today. But, he has been recovering well after we leave. Once we leave the hospital/clinic, it seems like he doesn't think about the events of the day anymore. All of the procedures went well and the doctors said Grant did really well. They also said he looked good and that he was responding very well to the treatments.
Rudy and I also struggled through all of the things Grant had to do today. It was frustrating for me today that people kept saying that things would get easier. I know they are trying to comfort us and, at first, I thought things would get easier. But, they are not, and I don't think they will. I don't think there is any way that seeing your son be put under anesthesia and terrified by what's being done to him will ever be easier to see.
The good news is that he does not have to take his steriods anymore right now. We should have the results of today's tests by Friday, Monday at the latest. We will know more after we discuss some options with the doctor. Grant already has appointments for Tues. & Wed. of next week.
Grant struggled through all of the things he had to do today. But, he has been recovering well after we leave. Once we leave the hospital/clinic, it seems like he doesn't think about the events of the day anymore. All of the procedures went well and the doctors said Grant did really well. They also said he looked good and that he was responding very well to the treatments.
Rudy and I also struggled through all of the things Grant had to do today. It was frustrating for me today that people kept saying that things would get easier. I know they are trying to comfort us and, at first, I thought things would get easier. But, they are not, and I don't think they will. I don't think there is any way that seeing your son be put under anesthesia and terrified by what's being done to him will ever be easier to see.
The good news is that he does not have to take his steriods anymore right now. We should have the results of today's tests by Friday, Monday at the latest. We will know more after we discuss some options with the doctor. Grant already has appointments for Tues. & Wed. of next week.
Tuesday, May 26, 2009
Day 28
Today wasn't such a great day, according to my mom. He is just having such a hard time with physical activity b/c he is so uncomfortable. For all those mommies out there, it's like he is pregnant. He's not really chubby, but his tummy is just awkward for him. He walks, sits, lays, etc. just like I did when I was pregnant. It really makes me feel bad for him. ;) He asked to go to bed at 6:15 tonight. He rested, but we managed to keep him awake until 7:45.
Well, we've finally made it! Tomorrow is Day 29! He has an appointment at the clinic in Fort Worth tomorrow at 7:30 a.m. He will get a dose of chemo in his IV. After we get his CBC results and he sees the doctor, we will go over to the special procedures area of the hospital. There, they will do another spinal tap, give him a dose of chemo in his spinal fluid and do another bone aspiration. He will be put completely under for this procedure. The worst part about that is that he can't eat after midnight. We talked about the fact that he won't be able to have breakfast tonight, so at least it won't be a surprise in the morning. He is still not going to be happy about it though. We will also give him his last dose of steroids in the morning, for right now. He will have to have them again at some point.
We will not know what comes next until we get all the results back from these tests. We should hopefully have a game plan by Friday. We are very curious to find out where we go from here.
It's probably going to be a long day at the hospital tomorrow. And an even longer morning, explaining why he can't have anything to eat.
Well, we've finally made it! Tomorrow is Day 29! He has an appointment at the clinic in Fort Worth tomorrow at 7:30 a.m. He will get a dose of chemo in his IV. After we get his CBC results and he sees the doctor, we will go over to the special procedures area of the hospital. There, they will do another spinal tap, give him a dose of chemo in his spinal fluid and do another bone aspiration. He will be put completely under for this procedure. The worst part about that is that he can't eat after midnight. We talked about the fact that he won't be able to have breakfast tonight, so at least it won't be a surprise in the morning. He is still not going to be happy about it though. We will also give him his last dose of steroids in the morning, for right now. He will have to have them again at some point.
We will not know what comes next until we get all the results back from these tests. We should hopefully have a game plan by Friday. We are very curious to find out where we go from here.
It's probably going to be a long day at the hospital tomorrow. And an even longer morning, explaining why he can't have anything to eat.
Monday, May 25, 2009
Day 27
Grant seems to be gaining a little more strength each day. However, he still has a long way to go. He is sleeping a little better, probably b/c he has been more active during the day and is exhausted at night. He wakes up about 5 and never goes back to sleep. He waits until the sun just starts to come up and then he opens our blinds and says, "It's sunshine!" He stands at the side of the bed and is just a chatterbox. And, if it takes me too long to get up, he says, "I'm tired of waiting" (very whiny of course). For the most part, he is in a very good mood at this time of the day. But his "tummy is just hungry." He still seems very uncomfortable and just doesn't know what to do with his new cheeks. ;)
Sunday, May 24, 2009
Day 26
Grant had a great day today. We had a small scare this morning when we routinely took his temperature and it was a little high. We decided to go ahead and go on a walk and check it when we got home. By the time we got home, it had come down and continued to come down even more later.
We went to my parent's house with some friends today. I joked that Grant got some "friend therapy" today. It was amazing how much more he did there today than yesterday, just b/c he had a friend to try to keep up with. He went swimming and was jumping in the pool. They played together with toys and had a lot of fun. He does wear people out asking them if they want a snack, if they are hungry, and what they want for lunch/dinner. ;)
It was really great watching him seem a little more like himself. He was laughing and playing. But, you could tell that he is still very uncomfortable. He still lacks a lot of strength and tires very easily. By the time we got home, he couldn't walk up the stairs. He asked to go straight to bed.
Saturday, May 23, 2009
Day 25
Grant rebounded pretty well today. We spent the day at my mom and dad's house, which Grant was excited about. Rudy was helping work the cows, so we spent quite a bit of time outside. It took coaxing sometimes, but he was willing at other times.
He has been very concerned with Trent. He is always making suggestions about what he thinks Trent needs/wants. Trent has really enjoyed swimming at Nana's (my mom) house. Grant does not want to go swimming, but he makes sure that Trent has toys to play with and sits in a chair and watches him the whole time.
Grant was pretty chatty at times today. He often makes random comments like "I like cheese pizza" (mostly about food).
He's getting really good at wearing a hat. But, I think we forgot about those ears and they got a little pink.
He is still very weak and can't do a lot of things he is used to. This is very difficult for him to understand, so then it damages his confidence. We are just praying that this does not cause him to have a spirit of fear. We hope that he still wants to try to do new things after he regains some strength.
Trent has absolutely loved playing in all the balloons that we brought home from the hospital. He stands in the middle of them and get the ribbons wrapped around him. Then he just starts walking all over the house with this huge cloud of balloons around him.
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