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.
Friday, May 22, 2009
Day 24
Today was good. Grant actually wanted to get out of the house. He also did not seem to be as obsessed with food today. He had his moments, but he was able to focus on other things. He is still really scared of the bath, but there was improvement today. He also didn't seem to have as many stomach issues. We don't think he feels bad physically most of the time. It just seems to come in short waves. Rudy and I are just so sad at how miserably uncomfortable he looks. He doesn't look like himself, of course, he is still very handsome. :) A stranger came up to us today and said they were admiring Grant's cheeks, how cute and precious they were. I had to hold back the tears. God always knows what we need.
He pats his own cheeks a lot, like he doesn't know what to do with them. And he touches his head and says, "my hair's still funny." He still is not sleeping well. He can't seem to get comfortable. He is very restless.
Tonight, while I was fixing dinner, we were just chatting. Grant said, "I'm so glad I'm not at the hospital anymore. I like it at home." I told him I was glad too. But, sometimes we have to go to the hospital so the doctors can make him feel better. And that's ok, b/c then we will get to come home again. He agreed. He knows that he had to go to the hospital b/c he has leukemia. He told me that when he gets better he wants to go back to school (Mother's Day Out).
He pats his own cheeks a lot, like he doesn't know what to do with them. And he touches his head and says, "my hair's still funny." He still is not sleeping well. He can't seem to get comfortable. He is very restless.
Tonight, while I was fixing dinner, we were just chatting. Grant said, "I'm so glad I'm not at the hospital anymore. I like it at home." I told him I was glad too. But, sometimes we have to go to the hospital so the doctors can make him feel better. And that's ok, b/c then we will get to come home again. He agreed. He knows that he had to go to the hospital b/c he has leukemia. He told me that when he gets better he wants to go back to school (Mother's Day Out).
Thursday, May 21, 2009
Day 23
Grant had a little rougher day today. He didn't seem to have as many high moments as recent days. Really, he just seems so uncomfortable. His stomach is very distended and he is self-conscious about it. He is also patting his own cheeks a lot. It's like he is trapped in someone else's body and it is very strange for him. His demeanor and facial expressions were sad.
On a more positive note, our family is continuously being blessed by all of you. Please know that we truly understand the power of prayer and appreciate all of our prayer warriors. We also are so thankful for all of the acts of kindness that have been shown to us. We are very grateful.
On a more positive note, our family is continuously being blessed by all of you. Please know that we truly understand the power of prayer and appreciate all of our prayer warriors. We also are so thankful for all of the acts of kindness that have been shown to us. We are very grateful.
Wednesday, May 20, 2009
Day 22
Grant had his clinic visit this morning. He was excited about the snacks and he watched Madagascar 2. He was laughing out loud at the movie in the playroom. He did pretty well while Dr. Howery was checking him out. The doctor gave a good report and said he looked great. After he saw the doctor, Grant asked to go back to the playroom. When it was time to do his treatment, he said, "but I don't like the medicine." Rudy said he did about the same in the treatment room. I sit outside the room. It's too hard for me to see him so scared.
The results from his blood work today were really great. All the numbers looked good and he won't need any transfusions. Best of all, his neutrophil # was 6903. This is the # that was 170 last week. Wow! Another miracle!!
We went to the park today and played with some friends. This was good for Grant and really good for Mommy. It took him a while to decide to play and he didn't play very long, but he had fun for a few minutes.
The results from his blood work today were really great. All the numbers looked good and he won't need any transfusions. Best of all, his neutrophil # was 6903. This is the # that was 170 last week. Wow! Another miracle!!
We went to the park today and played with some friends. This was good for Grant and really good for Mommy. It took him a while to decide to play and he didn't play very long, but he had fun for a few minutes.
Tuesday, May 19, 2009
Day 21
Rudy and I had to work most of the day today. So, the boys were at home with my mom. She gave a good report for the day. Grant played more and seemed a little more distracted from eating.
Mom told a funny story about Trent teasing Grant. Grant is endlessly wanting crackers and cheese. He was eating them out of the box while watching tv. He gets very 'zoned in' when watching tv. Trent snuck the box away from him. My mom took the bag of crackers out of the box to prevent a big mess. Finally, Grant realized Trent had the box and started fussing about it. So Trent would take the box over and put it on Grant's lap. Then he would take it back and run away laughing. Of course this made Grant fuss even more. But, I wish I would have seen it. It sounds pretty funny. For the most part, the boys are getting along well. I think it has been good for Grant to have Trent during all this. It gives him something else to think about other than his situation.
Grant has an appt. at the clinic in the morning at 9:30. Rudy is taking a half day off to come b/c we decided I couldn't handle it on my own. Plus, Grant needs his Daddy.
Mom told a funny story about Trent teasing Grant. Grant is endlessly wanting crackers and cheese. He was eating them out of the box while watching tv. He gets very 'zoned in' when watching tv. Trent snuck the box away from him. My mom took the bag of crackers out of the box to prevent a big mess. Finally, Grant realized Trent had the box and started fussing about it. So Trent would take the box over and put it on Grant's lap. Then he would take it back and run away laughing. Of course this made Grant fuss even more. But, I wish I would have seen it. It sounds pretty funny. For the most part, the boys are getting along well. I think it has been good for Grant to have Trent during all this. It gives him something else to think about other than his situation.
Grant has an appt. at the clinic in the morning at 9:30. Rudy is taking a half day off to come b/c we decided I couldn't handle it on my own. Plus, Grant needs his Daddy.
Monday, May 18, 2009
Day 20
Today, the Lord gave Grant a song in his heart. It was so sweet to see. He asked me to turn on some praise music and he immediately starting clapping and dancing around. We did this for quite a while. He was smiling and laughing. Then, later we had to run and errand and he sang with the music the whole time we were in the car.
He asked me about taking a particular snack to "school". I told him that he could not go to school b/c he was still sick. So, we started talking about going back to the clinic on Wed. He said he didn't like the clinic. I told him I knew that he didn't like it, but then we started talking about the things that we did like about it. By the time we were finished, we had a plan about what he wanted to do while he was there on Wed.
He asked me about taking a particular snack to "school". I told him that he could not go to school b/c he was still sick. So, we started talking about going back to the clinic on Wed. He said he didn't like the clinic. I told him I knew that he didn't like it, but then we started talking about the things that we did like about it. By the time we were finished, we had a plan about what he wanted to do while he was there on Wed.
Sunday, May 17, 2009
Day 19
Well, thank goodness we are on the downhill slope of this 30 day induction period. I don't know how many more days I can talk about food and feed Grant 24/7??? If you know Grant at all, you know how absolutely bazaar it must be to be feeding him constantly. The kid was a stick, skin & bones, and never wanted to really take the time to eat. Now, he literally eats all day and all night (no joking). I had wonderful infants that slept all night very soon after coming home. Now, I have a 3 year old that wants to snack all night. Ahhh! Rudy and I are not getting much sleep. One of his best moods of the day is at 3 a.m. He is ready to chat it up and laugh and joke. It's crazy!
For example, I will give you today's eating schedule:
7 a.m. - 2 waffles and a banana
9:30 a.m. - a slice of cheese pizza
10:30 a.m. - a bag of pretzels
12:00 noon - chicken nuggets and a lot of french fries
2:00 - a bowl of animal crackers
4:00 - pineapple
5:00 - a bowl of mac and cheese, half a bagel, yogurt
6:00 - corn and bread & butter
7:00 - crackers and cheese
7:45 - can I go to bed?
The rest of the day was spent trying to delay the next snack and telling him that his tummy needed to "rest" b/c he just ate. We also spend a lot of time discussing what he is going to eat next. He is craving salty carbs. We are at least trying to push some fruit. I know you all think it is crazy that I'm spending so much time writing about this. But, it has consumed our lives!
We had his pictures taken today with the bald head. He did pretty well. He was eating his pretzels the whole time. ;) He thinks his haircut is funny, b/c Daddy has the same one.
Grant and Trent are getting along very well. I think Trent is looking for attention b/c he is pushing all of our buttons. It's very funny though.
Ok, I must get to bed, so I can be ready for our 3 a.m. feeding.....
Saturday, May 16, 2009
Day 18
The plan for today was to get Grant's 3-year-old pictures taken and then take him to get his hair buzzed off since his hair started falling out. Unfortunately, Grant's photography session (http://www.jessicawilliamsphotography.com/) had to be postponed because it rained the majority of the day. However, we decided to go ahead with the buzzing of Grant's hair........ and my hair (pictures will be posted tomorrow). If you need your hair buzzed off, Lisa Brockington is the person to see. She's great. We thought if Grant saw that I was having my hair buzzed off, that he would be a little more ok with it. When I told him that we were going to get our hair cut, his only request was that Lisa wouldn't tickle his ears. He also wanted me to go first. When he saw her make the first pass with the clippers, he thought that was hilarious. But he quickly got bored with watching me get my hair cut and decided to read some Clifford - The Big Red Dog books. During his reading, he would occasionally look up at me and start laughing. If he didn't have cancer, I might have been mad at him. =) When it was Grant's turn for his hair cut, he did really well. He fussed a little when she got close to his ears but honestly, who hasn't gotten upset about that? Other than that, he laughed a good bit of the time. Great success. Having his hair buzzed off really changes his look. I know that's an obvious statement but you don't realize just how different he looks until you see him for yourselves. It's just one more reminder of what Grant is having to go through.
Anyway, we decided to go ahead with Grant's hair cut even though we hadn't had his pictures taken because having his pictures taken while he has a bald head is where he is at this point in his life and it needs to be documented. When he is an adult and he's cured of this cancer, he will need these pictures when he's sharing his testimony of what God has done in his life.
Anyway, we decided to go ahead with Grant's hair cut even though we hadn't had his pictures taken because having his pictures taken while he has a bald head is where he is at this point in his life and it needs to be documented. When he is an adult and he's cured of this cancer, he will need these pictures when he's sharing his testimony of what God has done in his life.
Friday, May 15, 2009
Day 17
More good news today. Dr. Heym called to let us know that the results came back on Grant's genetic testing. The genetics of his leukemia cells were 1 of the 2 with favorable results. Dr. Heym was very excited about this and told us it was "a reason to celebrate". We need all the reasons to celebrate we can find. This does not change his treatment for the first 30 days, but will effect where we go from there.
This was an especially good day to get this news b/c it had a difficult start for me. I gave Grant a bath this morning and his hair started falling out. This was expected, but was still a hard reality to see and accept. This part will probably be harder on his mama than it is on him. We have an appointment for Grant and Rudy to get their heads buzzed tomorrow. Stay tuned for pictures.
This was an especially good day to get this news b/c it had a difficult start for me. I gave Grant a bath this morning and his hair started falling out. This was expected, but was still a hard reality to see and accept. This part will probably be harder on his mama than it is on him. We have an appointment for Grant and Rudy to get their heads buzzed tomorrow. Stay tuned for pictures.
Thursday, May 14, 2009
Day 16
Grant had another good day today. He has had some nausea since his treatment yesterday, but has handled it well. It only seems to bother him for about 10 min. at a time. Grant got to play with some friends tonight and he was excited about that.
He is still obsessed with food. The doctors have all told us to expect this but we really had no idea. He is waking us up about 3 a.m. every night wanting a snack. He just wants to talk and talk, mostly about food. We have also discovered that this is when he is one of his best moods. He's talkative and laughing and joking. We try to take him back to his room, but he comes back in about every 30 min. It's like he lays in there thinking and then he just has to come in and talk to us. I think he stays awake from 3-6:30 a.m., when we finally let him get up and go eat breakfast.
Trent is doing better too. He is sleeping later and seems more relaxed. He and Grant are really starting to play together and that is fun to watch.
He is still obsessed with food. The doctors have all told us to expect this but we really had no idea. He is waking us up about 3 a.m. every night wanting a snack. He just wants to talk and talk, mostly about food. We have also discovered that this is when he is one of his best moods. He's talkative and laughing and joking. We try to take him back to his room, but he comes back in about every 30 min. It's like he lays in there thinking and then he just has to come in and talk to us. I think he stays awake from 3-6:30 a.m., when we finally let him get up and go eat breakfast.
Trent is doing better too. He is sleeping later and seems more relaxed. He and Grant are really starting to play together and that is fun to watch.
Wednesday, May 13, 2009
Day 15
We are halfway through the induction phase. The clinic visit went well this morning. All of Grant's counts were good. He will not need any transfusions right now. However, his neutrophil count went down from 260 to 170 since we left the hospital. Anything below 500 is HIGH risk of infection. We just have to be extremely careful when his number is that low.
The clinic has a playroom with toys, movies, and lots of snacks. He did well most of the time except the 10-15 min. when they were accessing his port, taking a blood sample, and administering the chemo treatment. The only thing that should hurt is the prick of the needle going into the port. However, he is so fearful, he cried the whole time he was in the treatment room. The good news is that he seemed to recover quickly. He seemed fine as soon as he left the treatment room. By the time we left, he was eating another snack and asking for tater tots.
The kid talks about food all the time. He's eating more than normal, but a lot of it is talk. He only eats a few bites of something and then decides he wants something else. Last night, he came in our room and got in our bed at 3 a.m. We had a 30 min. conversation about the things he likes to eat and what he wanted to have for breakfast. He has put on 2 lbs. since we left the hospital. His tummy is really sticking out and his face is filling out. He got really puny at the hospital so we were glad to see he was gaining some weight. But, the doctor said today that he would probably pass up looking "normal" pretty fast. The drugs will make him look a little swollen.
Grant was playing with his doctor's kit today. He was getting very frustrated with Trent when he wouldn't stand still to take his medicine or get his temperature taken. Then he came in the room with the blood pressure cuff saying, "It's just a little hug, just a little hug." Do you think he's heard that a few times before?! I'm just glad to see Grant playing more today, especially with Trent.
We are having a good day!
The clinic has a playroom with toys, movies, and lots of snacks. He did well most of the time except the 10-15 min. when they were accessing his port, taking a blood sample, and administering the chemo treatment. The only thing that should hurt is the prick of the needle going into the port. However, he is so fearful, he cried the whole time he was in the treatment room. The good news is that he seemed to recover quickly. He seemed fine as soon as he left the treatment room. By the time we left, he was eating another snack and asking for tater tots.
The kid talks about food all the time. He's eating more than normal, but a lot of it is talk. He only eats a few bites of something and then decides he wants something else. Last night, he came in our room and got in our bed at 3 a.m. We had a 30 min. conversation about the things he likes to eat and what he wanted to have for breakfast. He has put on 2 lbs. since we left the hospital. His tummy is really sticking out and his face is filling out. He got really puny at the hospital so we were glad to see he was gaining some weight. But, the doctor said today that he would probably pass up looking "normal" pretty fast. The drugs will make him look a little swollen.
Grant was playing with his doctor's kit today. He was getting very frustrated with Trent when he wouldn't stand still to take his medicine or get his temperature taken. Then he came in the room with the blood pressure cuff saying, "It's just a little hug, just a little hug." Do you think he's heard that a few times before?! I'm just glad to see Grant playing more today, especially with Trent.
We are having a good day!
Tuesday, May 12, 2009
Day 14
Grant is improving a little each day. Today, my mom stayed with the boys so that I could go to work. She was amazed out how much Grant was eating. He eats a little of something and then says he wants something else. Tonight he wanted spaghetti?? He's only eaten spaghetti one time before. We didn't have spaghetti. :( He is more and more active, but still has little strength. It's so hard to watch him struggle with everyday tasks. And he asked to go to bed at 7 tonight.
We go to the clinic tomorrow for the first time. The appointment is at 10. They will take a blood sample when we first get there. It will take an hour to get the results back. At that point, the doctor will decide if he needs any other treatment besides just the chemo. He could possibly need a blood or platelet transfusion. They will do those in the clinic if needed. Rudy and I are going with Grant and my mom will be watching Trent.
My mom has decided to take a leave of absence from the Pregnancy Center to help care for our family. We are so grateful for everything you all have done for us and continue to do.
We go to the clinic tomorrow for the first time. The appointment is at 10. They will take a blood sample when we first get there. It will take an hour to get the results back. At that point, the doctor will decide if he needs any other treatment besides just the chemo. He could possibly need a blood or platelet transfusion. They will do those in the clinic if needed. Rudy and I are going with Grant and my mom will be watching Trent.
My mom has decided to take a leave of absence from the Pregnancy Center to help care for our family. We are so grateful for everything you all have done for us and continue to do.
Monday, May 11, 2009
Day 13
Grant seemed to have a little better day today. He was more talkative and a little more mobile. He is still very fatigued and weak. Things he usually doesn't think about have been difficult i.e. climbing into his chair at the kitchen table. He got a haircut today (not shaved). He normally likes getting his hair cut and is such a big boy. Today, he cried almost the whole time. He is just so scared. He wouldn't even let me lift his shirt to look at his tummy. I had to promise to sit on my hands while he lifted his shirt. He is still eating more than normal, but he is very indecisive about what he wants. He has been indecisive about other things too. He couldn't decide which movie he wanted to watch so he asked me to pick.
Grant has been very sweet to his brother, especially today. Grant was sitting at the table eating a snack and Trent was following me around the kitchen crying. I had tried to give him a snack, but he just through a fit. Grant said, "Mom, can I get down and help him?" Of course I said yes. So, he very calmly walked over and got the bowl of Cheerios off the floor. He got one out and held it out to Trent. He said, "Here Trent, you wanna snack?" Trent stopped crying and looked at him. Trent ate the Cheerio. Grant said, "He likes it! You like it Trent. You want another one?" He stood in the kitchen and fed him all the Cheerios. It was so sweet!!!
Trent is having a hard time if I am up moving around. He seems to be ok if I'm sitting still, but gets very nervous if I move.
It's hard to not be able to give a medical report. I liked knowing exactly where we stood. I feel very responsible for knowing if something is not right and that freaks me out a little. Keep praying for us.....
Grant has been very sweet to his brother, especially today. Grant was sitting at the table eating a snack and Trent was following me around the kitchen crying. I had tried to give him a snack, but he just through a fit. Grant said, "Mom, can I get down and help him?" Of course I said yes. So, he very calmly walked over and got the bowl of Cheerios off the floor. He got one out and held it out to Trent. He said, "Here Trent, you wanna snack?" Trent stopped crying and looked at him. Trent ate the Cheerio. Grant said, "He likes it! You like it Trent. You want another one?" He stood in the kitchen and fed him all the Cheerios. It was so sweet!!!
Trent is having a hard time if I am up moving around. He seems to be ok if I'm sitting still, but gets very nervous if I move.
It's hard to not be able to give a medical report. I liked knowing exactly where we stood. I feel very responsible for knowing if something is not right and that freaks me out a little. Keep praying for us.....
Sunday, May 10, 2009
Day 12
Today has been kind of a strange day. We are very excited to be free from the hospital. But, home just isn't home yet. Grant acts like it's a strange place and he doesn't really know what to do. He is still very fatigued and weak. So, climbing the stairs is a pretty big task right now, when it used to be something he did over and over again. He actually asked me to go to bed tonight.
It is good to have the boys back together again. The one thing Grant kept asking me when we left the hospital was when we were going to get Trent.
We all have some adjusting to do. Trent seemed to have a little difficulty tonight. He's not eating much. Rudy and I are just going to need patience. We're just not really sure what the future holds.
It is good to have the boys back together again. The one thing Grant kept asking me when we left the hospital was when we were going to get Trent.
We all have some adjusting to do. Trent seemed to have a little difficulty tonight. He's not eating much. Rudy and I are just going to need patience. We're just not really sure what the future holds.
We're Home!!
We got to leave the hospital about 10 this morning. All of Grant's counts went up again today. We will keep you posted on how the homecoming goes.
Saturday, May 9, 2009
Day 11
Today, we were much more active than we've been since being admitted to the hospital. Since we've been here, we've had to coax Grant out of the room. But today, the majority of the time, it was Grant's idea. He either wanted to ride in the wagon or go for a walk. It appears that cabin fever had set in and he just needed to get out of this tiny little room. We have walked every inch of this hospital multiple times... where we were allowed access, of course.
Speaking of getting out of this room, the Doctor on weekend duty (Dr. Beam) came by to speak with us about Grant's blood counts, just like they do everyday. He told us that Grant looks great and his counts are increasing nicely, so there's a good chance we'll get to go home tomorrow (Sunday). This is obviously very different than what Dr. Heym had told us yesterday. But when Dr. Heym told us that it would be Monday or Tuesday, he was looking at an increase of just 10 neutrophil cells (70 to 80) from the previous day. This morning, Dr. Beam saw that his neutrophils jumped from 80 to 150. He said he would discuss whether or not we could be sent home tomorrow with Dr. Heym since Grant is Dr. Heym's patient. We will let you know what they decide.
Speaking of getting out of this room, the Doctor on weekend duty (Dr. Beam) came by to speak with us about Grant's blood counts, just like they do everyday. He told us that Grant looks great and his counts are increasing nicely, so there's a good chance we'll get to go home tomorrow (Sunday). This is obviously very different than what Dr. Heym had told us yesterday. But when Dr. Heym told us that it would be Monday or Tuesday, he was looking at an increase of just 10 neutrophil cells (70 to 80) from the previous day. This morning, Dr. Beam saw that his neutrophils jumped from 80 to 150. He said he would discuss whether or not we could be sent home tomorrow with Dr. Heym since Grant is Dr. Heym's patient. We will let you know what they decide.
Friday, May 8, 2009
Day 10
Today was pretty uneventful. We were actually a little bored...not b/c we didn't have things we could do. We are just kind of tired of being in this little room. Grant is still a little reluctant to leave the room though. Dr. Heym came and gave us a report this afternoon. His levels had gone up... a little. He said they had just inched up, which he was completely happy with. However, he didn't guarantee that we would go home on Monday. He said they are really conservative on the first trip home and he didn't want to send us home until they came up quite a bit more. I asked and he said there wasn't really a magic number we were trying to reach, so we don't really know when he will feel comfortable with that. He is very happy with how his body has responded to the treatments and says he looks and sounds great.
The nurses woke Grant up this morning (at 9) to check his vitals. This kind of woke him up on the wrong side of the bed. He was pretty grumpy all morning. He took a little nap and woke up on the other side of the bed after that. His appetite has really increased, but he can't decide what he wants to eat. He's eating 4 or 5 bites of one thing and then wanting something else. We keep the nurses hopping. We had a picnic outside for lunch so that was a nice change. He's doing great with his medications. We are just waiting now....
The nurses woke Grant up this morning (at 9) to check his vitals. This kind of woke him up on the wrong side of the bed. He was pretty grumpy all morning. He took a little nap and woke up on the other side of the bed after that. His appetite has really increased, but he can't decide what he wants to eat. He's eating 4 or 5 bites of one thing and then wanting something else. We keep the nurses hopping. We had a picnic outside for lunch so that was a nice change. He's doing great with his medications. We are just waiting now....
Thursday, May 7, 2009
Day 9
Grant had another good day and got a good report from the doctor. He said that his blood levels did go up, but just a little. That was all he was looking for though. They just needed to go in the right direction on their own. He is very confident that we will be able to go home on Monday. Grant will then begin his outpatient care with his first clinic visit on Wednesday. They will be checking his blood levels and administering the IV chemo. We will continue the steroids orally at home. He will not have to have any more "procedures" until day 29.
Last night he had a little mishap. He started complaining about his port. I thought it was just itching from the dressing. But, he kept complaining. I had the nurse come in and check it and she determined that it was not in right and needed to be redone. They took him to the treatment room and he screamed the whole time. They were only doing something that hurt for about one second. But he was really scared. He was fine as soon as I was able to go get him. It has not bothered him since.
This morning I had to stick a plastic cover over his port to give him a bath. He screamed that entire time too because he knew it was going to hurt to take it off. He was anticipating the pain the whole time.
He's done really well at taking his medicine. He starts fussing the minute the nurse walks in with those 2 syringes and says "I don't like those, they're yucky!" But then he takes them like a champ. I say all this to make the point that he is very aware of the things that are going on.
The doctor allowed Grant to be disconnected from his IV fluids today. That makes it much easier for him to get up and move around.
Trent got to come play again this evening. They gave each other a big hug when they saw each other. So Sweet!
Last night he had a little mishap. He started complaining about his port. I thought it was just itching from the dressing. But, he kept complaining. I had the nurse come in and check it and she determined that it was not in right and needed to be redone. They took him to the treatment room and he screamed the whole time. They were only doing something that hurt for about one second. But he was really scared. He was fine as soon as I was able to go get him. It has not bothered him since.
This morning I had to stick a plastic cover over his port to give him a bath. He screamed that entire time too because he knew it was going to hurt to take it off. He was anticipating the pain the whole time.
He's done really well at taking his medicine. He starts fussing the minute the nurse walks in with those 2 syringes and says "I don't like those, they're yucky!" But then he takes them like a champ. I say all this to make the point that he is very aware of the things that are going on.
The doctor allowed Grant to be disconnected from his IV fluids today. That makes it much easier for him to get up and move around.
Trent got to come play again this evening. They gave each other a big hug when they saw each other. So Sweet!
Wednesday, May 6, 2009
Day 8
Well, obviously, day 8 has been everything we could ask for and more. The doctor's actual words were "this is the best possible scenerio." Grant came out of the "giggle juice" very well today. He was supposed to lay flat on his back for an hour after the spinal procedure to prevent headaches. We made it to 30 min. only after we fought him for 15. He was asking to sit up and eat. His favorite food in the hospital has been the waffle sticks. We've also had a few requests for biscuits. He's had a lot of fun going through the snack bucket and picking a snacks, although he has a hard time deciding. He was in good spirits the rest of the day. He got to disconnect from the IV for a few hours this afternoon so that was exciting. We are planning to do that again tomorrow when Trent comes to visit.
We just want to thank everyone again for everything....from watching Trent, to bringing treats, and especially all of your prayers. Nothing has been overlooked and we are grateful for all of you.
We just want to thank everyone again for everything....from watching Trent, to bringing treats, and especially all of your prayers. Nothing has been overlooked and we are grateful for all of you.
God is so Good!!!
We've had a huge answer to prayer! The test results came back completely clear. Grant does not have any leukemia in his bone marrow. The doctor's goal for the day was that the cancer cells would be below 5%. His count was 0%. God has done a miracle in Grant and we are so thankful. Now, he will just be monitored to make sure that his body can recreate the good cells that he needs. His white blood cells are really low. So, we will probably be here until Monday to make sure those recover. He has not needed blood for several days, so his red blood cells are pretty good. Please just continue to pray for complete healing.
Day 7
We've had another great day! Grant's appetite has increased and he is asking for waffles much of the time. He has also been snacking on all the food we have in the room. He played with many of the wonderful toys that he has received. Today was the first day that he really played normally. He didn't need a lot of prompting and prodding. He just got down out of the bed himself and got things to play with. He has been walking all over the room which can be kind of dangerous when he forgets he's attached to the IV. It really does not seem to bother him at all. He is still a bit leary of leaving the room. I really have to talk him into it and have a good reason for him to go for a walk. The only reason he wants to leave is to chase the "ladies" with Lightning McQueen. Today he told me I just needed to "ask that 'wady' for some milk."
He has even warmed up to Dr. Heym. When he came in to talk to us today, he made Grant smile and laugh. That's a big step.
The doctor also gave us another awesome report on Grant. He told us that the blood samples they took today did not show any leukemia cells. This is great news! But the most important test will be the bone marrow tomorrow. It's good that the blood does not show any, but they flush out of the blood first. So, there could still be some in the bone marrow. They will be doing several things in the morning while Grant is sedated. They will take another bone marrow sample to test the percentage of leukemia cells. We are praying for ZERO, complete remission. They will also do a spinal tap and adminster another round of chemo in his spinal fluid. He will get his second round of chemo given through the port in his chest. This needle and dressing will have to be changed as well. And he will also continue his oral steroid chemo that he takes twice a day. Tomorrow is going to be a big day. Grant sedates very easily and very well. Therefore, it takes a little while for him to come out of it. That will be ok b/c he has to lay flat on his back for an hour after the spinal procedure to prevent headaches. All of this should take place at 8:00 a.m. We should have all the results back by noon. I will try to post as soon as possible. Thanks for all of your continued prayers. We feel each one.
Monday, May 4, 2009
Day 6
Wow! I don't even know what good stories to tell for today. We've had so many. Today has been such and improvement. We actually feel like we have our Grant back. He had his first chemo shot this morning. He took it like a champ! He never even said a thing about it and he did not have one side effect from it. Whoo hoo! We were ready for a bit of a difficult day, but it turned out to be the best one so far.
We went for several walks around the floor. He is still hooked to an IV, so someone has to push his pole around for him. We took his remote control Lightning McQueen car out into the halls today and played. We were chasing down the nurses. Rudy said it was payback for last week. ;) Grant laughed and laughed. He actually took off running down the hall chasing the car at one point and the pole pusher (me) wasn't ready. I took off after him trying to not let his IV pull. I didn't realize the pole was still plugged into the wall. The cord popped out and we made quite a scene. That's sounding more normal, right?
Trent was able to come up and play tonight. Grant had been asking about him. When they saw each other, they ran together and held hands. I think it was the sweetest thing I've ever seen! They played together in the playroom and got back to acting like normal brothers.
Grant has talked and laughed much more today. He has not been crying when they come to take his vitals. And he's actually been interacting with the nurses a little bit.
I could go on and on about all the little good things that we've seen happen today. Medically, we got another good report from the doctor. He is very pleased with his continued improvement. He mentioned the possibility of getting to go home at the end of the week. The tests on Wed. will be critical.
Sunday, May 3, 2009
Day 5
Today has been a pretty good day. Grant was able to sleep pretty well last night. He is still coughing but the doctor just says there is not much we can do. We are doing some trial and error on cough medicine to find one to help him. He was very quiet and reserved this morning. We tried to get him to eat the breakfast that was delivered to him (cereal), but he was not interested. A little later, he just sat up in bed and said, "I want a waffle." We all looked at each other (Rudy, Uncle Keith and I) and decided we would somehow make that happen. I asked the nurse and she said she would get some up to us. Of couse, once it was delivered, he decided he didn't want it. Thankfully, that proved to be a way for him to get some control and he eventually ate all the waffles. We were so excited. That's the most he's eaten in over a week. After that, we watched some cartoons, talked, played and even laughed a little. Then, he took a nap which always makes him wake up a little grumpy. The afternoon held a few mood swings, but they were not extreme. He's been a Daddy's boy through most of this ordeal and Daddy decided to eat some dinner tonight, so I was going to sit next to him on the bed. He started telling me he didn't want me there and fussing for Daddy. He was pushing me off the bed and saying Mooooove. So, I got up and sat somewhere else. His Daddy told him he needed to act nice and not be ugly to me. He very matter-of-factly responded with an "I'm Grumpy". :) Rudy said, "We know you are, but you still have to act nice." You never know what you're going to get. He's asked for another waffle for dinner, but has decided not to eat it. He has done a little better with the nurses today and has not cried every time they talk to him. We keep getting really good reports from the doctor and we feel like, overall, today has been an improvement. Tomorrow, Grant will be getting an additional chemo treatment administered through a shot. They shoot it into the muscle in his leg, but, because of his size, the volume is too large for one shot. So, he will have to have one in each leg, hopefully simultaneously. They will be monitering him closely for side effects. This is tenatively scheduled for noon. We are a little concerned that this will take us backward since he will be getting stuck again. Hopefully, it won't be a big setback.
Saturday, May 2, 2009
Up and down
Grant's last couple of days have been pretty up and down. This morning, when he woke up, he was in a good mood. For breakfast, he had a little cereal and almost a whole banana. I also tried to get him to eat a Pop-Tart but he was having none of it... so I ate it. You snooze, you lose, pal. On a serious note, it was really great that he ate that much for breakfast. This seemed to give him more energy than he's had in a while. He was laughing and acting silly, which of course made mine and Amy's day.
Then he took a nap around 11 AM and when he woke up, things were not going so well. It was like his evil twin snuck in the room and traded places with him while Amy and I were busy talking with the nurse or something. He was hard to get along with, very irritable, and didn't eat or drink much of anything the rest of the day.
He is having a very difficult time trusting anyone who comes in the room that he does not know. The first couple of days were very traumatic for him because every few hours someone new was coming in the room to stick him with a needle. We tried to help by telling him that they were there to make him feel better but then that person would hurt him by sticking him with a needle. That's not easily reconciled by a 3 yr old.
It appears that he has completely lost faith in the hospital because he says multiple times a day that "he wants to go home". We still haven't come up with a good reply for that one. He says this even though the nurses don't have to stick him with needles anymore. He's just done. At this point, there is nothing you can say that will make him ok with being in the hospital.
Like I said at the beginning, he had a good morning and we are very grateful for that. We're looking forward to those good mornings becoming good days.
Then he took a nap around 11 AM and when he woke up, things were not going so well. It was like his evil twin snuck in the room and traded places with him while Amy and I were busy talking with the nurse or something. He was hard to get along with, very irritable, and didn't eat or drink much of anything the rest of the day.
He is having a very difficult time trusting anyone who comes in the room that he does not know. The first couple of days were very traumatic for him because every few hours someone new was coming in the room to stick him with a needle. We tried to help by telling him that they were there to make him feel better but then that person would hurt him by sticking him with a needle. That's not easily reconciled by a 3 yr old.
It appears that he has completely lost faith in the hospital because he says multiple times a day that "he wants to go home". We still haven't come up with a good reply for that one. He says this even though the nurses don't have to stick him with needles anymore. He's just done. At this point, there is nothing you can say that will make him ok with being in the hospital.
Like I said at the beginning, he had a good morning and we are very grateful for that. We're looking forward to those good mornings becoming good days.
To all Callers and Visitors
Several people have said they don't want to call us or visit for fear of overwhelming us. Please don't feel like you are bugging us. We want visitors, it's just helpful if you call before you come. We also enjoy receiving calls. Just know the house maximum for questions is set at two per person. =)
Friday, May 1, 2009
Isaiah 41:13
I am the Lord your God, I will uphold your right hand, and I am saying to you, DO NOT FEAR, I will help you.
Isaiah 41:13
Isaiah 41:13
The Treatment Plan
We've had a lot of questions about what the plan of action is. I will try to tell you to the best of my knowledge. :)
The first 30 days are the most critical. Grant started treatment on Wed. so we are on day 3. For these 30 days, he will be taking an oral steriod form of chemo. twice a day. He will be getting a dose of chemo. through his IV port once a week. He will receive a chemo. shot in the muscle in his leg which is scheduled for Monday. And he will be receiving a chemo. treament in his spinal fluid on days 8 and 29. All of these are different drugs. So, as you can imagine, there are a plethora of possible side effects. The absolute most critical checkpoint is day 29. He must have less than .01% leukemia cells to begin his maintenance phase. If there are more than .01%, he will have to continue with aggresive, intensified chemo.
We are learning A LOT.
The other question we are getting is when we will get to go home. They originally told us we would be here for 10-14 days. The determining factors will be:
*if his test at day 8 comes back with at least <5% leukemia cells; if not, we will probably have to stay for the next test on day 15
*how well his blood count is cycling; does he still need blood transfusions
*if his white blood cell count is out of the 'increased risk for infection' range
So, we really won't know until we get to that point
The first 30 days are the most critical. Grant started treatment on Wed. so we are on day 3. For these 30 days, he will be taking an oral steriod form of chemo. twice a day. He will be getting a dose of chemo. through his IV port once a week. He will receive a chemo. shot in the muscle in his leg which is scheduled for Monday. And he will be receiving a chemo. treament in his spinal fluid on days 8 and 29. All of these are different drugs. So, as you can imagine, there are a plethora of possible side effects. The absolute most critical checkpoint is day 29. He must have less than .01% leukemia cells to begin his maintenance phase. If there are more than .01%, he will have to continue with aggresive, intensified chemo.
We are learning A LOT.
The other question we are getting is when we will get to go home. They originally told us we would be here for 10-14 days. The determining factors will be:
*if his test at day 8 comes back with at least <5% leukemia cells; if not, we will probably have to stay for the next test on day 15
*how well his blood count is cycling; does he still need blood transfusions
*if his white blood cell count is out of the 'increased risk for infection' range
So, we really won't know until we get to that point
Rough Day
Grant had a pretty restless night. He is still battling a cough that he just can't seem to shake. We were able to give him a bath this morning and get all the adhesive cleaned off of him. He's got some jammies on now which is nice. He walked out of the room for a minute the other day and was looking at all the nurses out there. Then he leaned over to me and said "I want clothes." : ) We went for a walk in a wagon this morning and this afternoon and were able to take him outside. It was good for him to get some fresh air. He also went to the playroom they have down the hall. He's still just kind of going along with things though. He's not real excited about any of this. He has told us he wants to go in the car and go home several times. He is very scared of anyone who walks in our room. He is not having to be stuck with anything anymore since he got the port, but he is still scared of everything. The blood pressure cuff is the worst. It's very hard to see that fear in his face. However, the doctor came by today and is VERY pleased with his progress. He has not had a fever since Wed. night. His lungs have cleared despite the lingering cough. His blood counts all looked good today after receiving a blood transfusion.
Subscribe to:
Posts (Atom)
