This morning Steven was sitting up in his hospital bed when I opened my eyes, "Hey Dad, can I play the ipad? ... And I'm starving! Can I have breakfast?"
Awake, alert, and appetite. All good signs this was to be a better day than yesterday. Later in the morning he downed two donuts.
His methotrexate levels this morning were low enough that he could have his first blood transfusion. That definitely helped bring a little life and color back into him too (though I think the donuts worked better :) ).
My favorite part of the day was when we made our trek out to the fresh air in the "courtyard" area of the hospital. Steven said to me as we walked down the hallways, toting his IV pod along, and wearing his breathing mask, "I haven't really seen any other sick kids here." This was a little surprising to me. We passed a few rooms with open doors, "Ah, now I have." he said, as if feeling a little more like he wasn't alone. Maybe we need to get out in the hallways more.
When we made it to the courtyard, there happened to be a nerf football lying there. We played catch for a while. Steven was his old self. We looked for life flight helicopters. When it got too cold we went back in.
My parents came to visit us later on, and his other Grandma is with him tonight.
The rest of the day was spent in good spirits. I'm hopeful his methotrexate levels will take a dive tomorrow.
I felt a bit guilty though as I left the hospital. I get to go, but he has to stay, perhaps two more nights. He's a trooper!
Showing posts with label methotrexate. Show all posts
Showing posts with label methotrexate. Show all posts
Saturday, April 23, 2011
Friday, April 22, 2011
A rough 24
Rob is at the hospital with Steven tonight. Steven has had a rough go of this round. Last night he was throwing up worse than he ever had. This was supposed to be the easy chemo!!! What happened? Not only that, but he isn't clearing the methotrexate as fast as he has in the past. My Easter-at-home dreams are slipping away. I won't give up hope yet, who knows what the morning will bring?
I hope it brings a methotrexate level low enough that he can have a transfusion tomorrow. I suspect that his low red blood cell counts aren't helping our situation here. Maybe new blood can solve some problems. I tried to help him do homework this morning, but he had such a hard time concentrating, he was even crying. It broke my heart because he cries so rarely. So we stopped homework and I gave him the Ipad. Somehow he manages to concentrate on that.
And then there is me. I'm not a big crier either, but today has been rough. I can't go 20 minutes without breaking down into tears. It is so hard to see him suffer, and so hard to see other people suffer. It's going to be an Ambien night for sure--my mind is racing over statistics and treatments and the future and the present.
The highlight of my day was taking the girls to the hospital to see Steven. They loved seeing the place we always talk about--"at the hospital." They even got to see the life-flight helicopter land out Steven's window. As we were getting ice from the ice machine, Laura said, "The hospital is so so so fun." As she said this, a bald and sickly little girl about her age was pulled past her in a wagon. I don't think Laura saw, but the contrast just struck me and I cried, again. I don't think "fun" is the word I would use.
I hope it brings a methotrexate level low enough that he can have a transfusion tomorrow. I suspect that his low red blood cell counts aren't helping our situation here. Maybe new blood can solve some problems. I tried to help him do homework this morning, but he had such a hard time concentrating, he was even crying. It broke my heart because he cries so rarely. So we stopped homework and I gave him the Ipad. Somehow he manages to concentrate on that.
And then there is me. I'm not a big crier either, but today has been rough. I can't go 20 minutes without breaking down into tears. It is so hard to see him suffer, and so hard to see other people suffer. It's going to be an Ambien night for sure--my mind is racing over statistics and treatments and the future and the present.
The highlight of my day was taking the girls to the hospital to see Steven. They loved seeing the place we always talk about--"at the hospital." They even got to see the life-flight helicopter land out Steven's window. As we were getting ice from the ice machine, Laura said, "The hospital is so so so fun." As she said this, a bald and sickly little girl about her age was pulled past her in a wagon. I don't think Laura saw, but the contrast just struck me and I cried, again. I don't think "fun" is the word I would use.
Thursday, April 21, 2011
Update
We made it to the hospital and are doing fine. The chemo started around 5:30, which is good. It looks like Easter at home is a real possibility. The nurse practitioner considered starting with a blood tranfusion but that would have slowed us down quite a bit, so we decided that since he doesn't feel too sick, they will do the transfusion in a day or two, when his methotrexate levels are low. They will closely monitor his ph levels and give him sodium bicarbonate as a pill during the transfusion if they need to. That may not make sense to anyone, but there you have it. Oh, and the nurses were shocked that Steven hasn't had a transfusion yet and he is in week 9 of chemo. What does that mean? I'd like to take it as a little miracle, but my worrying self wonders if the chemo isn't killing the red blood cells enough, is it killing the cancer? The only answer they will give is that we have to wait for the biopsy.
In other news, we have been on a quest to help Steven gain weight so that the surgery recovery will be better. We try to get him any kind of food he can dream up. Mostly he wants homemade hamburgers (a result of the anemia?). Andrew said to me the other day--"when can we have something to eat besides chicken and hamburgers? We always have what Steven wants and I never get pasta!" We do eat too many hamburgers. He had one for lunch and dinner today and he has probably had 7 others this week. The diet seems to be working-he had gained some weight. I know it is working for me because I finish up the high calories shakes I make.
In other news, we have been on a quest to help Steven gain weight so that the surgery recovery will be better. We try to get him any kind of food he can dream up. Mostly he wants homemade hamburgers (a result of the anemia?). Andrew said to me the other day--"when can we have something to eat besides chicken and hamburgers? We always have what Steven wants and I never get pasta!" We do eat too many hamburgers. He had one for lunch and dinner today and he has probably had 7 others this week. The diet seems to be working-he had gained some weight. I know it is working for me because I finish up the high calories shakes I make.
Monday, March 28, 2011
Friday, March 25, 2011
Steven finished his infusion of methotrexate a few hours ago. Once again, he isn't feeling nauseated. He has a couple of little mouth sores, but they don't look too bad. He acts like they are killing him, though. He will likely get a few more with this round, but the doctors are really encouraged that they are so minimal. The doc this morning told met that it is really good for Steven that these side effects are mild--these side effects aren't necessary for the chemo to kill cancer. Now the low blood counts are a different story. But the less we have to deal with mouth sores and nausea, the more likely it will be that we stay on schedule. I'm feeling so grateful right now.
Sunday, March 20, 2011
Coming home
Hooray! Steven gets to come home this morning. His methotrexate numbers are down this morning to .10--just enough to release him from the hospital. He may even make it home in time for church.
My last post was a little innaccurate. I guess what they test is his blood to see if the chemo is gone. It is an expensive test--something like $500 each time they do it. They test him several times during the first 24 hours to make sure his body is clearing it and after that they only test him once a day. So if he tests at .12 or even .11, they have to wait until the next day to test again and then release him. Having any of this chemical stick around in your body is really dangerous, so they have to keep fluids going all the time to flush it out.
In other news, for the first time in my life I care about March Madness. Maybe it is just something to think about other than cancer. Go BYU! Even Rob is cheering for the Cougars this year (along with the Buckeyes). Steven was in an overflow area in the hospital this stay instead of the locked down ICS unit. I brought two of his cousins up to watch the game last night. It was great fun. He even watched most of it, but he was perhaps more interested in the book on nuclear distasters I brought him from the library. He is liking basketball, but I think we know where his real interests lie. His nurse said he hadn't seen a kid his age that liked CNN so much.
My last post was a little innaccurate. I guess what they test is his blood to see if the chemo is gone. It is an expensive test--something like $500 each time they do it. They test him several times during the first 24 hours to make sure his body is clearing it and after that they only test him once a day. So if he tests at .12 or even .11, they have to wait until the next day to test again and then release him. Having any of this chemical stick around in your body is really dangerous, so they have to keep fluids going all the time to flush it out.
In other news, for the first time in my life I care about March Madness. Maybe it is just something to think about other than cancer. Go BYU! Even Rob is cheering for the Cougars this year (along with the Buckeyes). Steven was in an overflow area in the hospital this stay instead of the locked down ICS unit. I brought two of his cousins up to watch the game last night. It was great fun. He even watched most of it, but he was perhaps more interested in the book on nuclear distasters I brought him from the library. He is liking basketball, but I think we know where his real interests lie. His nurse said he hadn't seen a kid his age that liked CNN so much.
Thursday, February 24, 2011
Battle plan
So many people have expressed concern with Steven's cancer diagnosis that we have decided to do a blog to keep our family and friends informed. Steven helped me with the name of the blog and the title of this post--he's in war mode. I've been trying to get something up for a few days here, but it has been so overwhelming. Our hearts and minds are full and I don't even know where to start. Here are some answers to a few questions that people ask us. Hopefully now that the basics are out in the open, we can put up some stories and pictures and maybe even have Steven share some of what he is going through in future posts.
What is Steven's diagnosis?
Steven has been diagnosed with osteosarcoma, a rare cancer in the bone usually found in children and adolescents. The tumor is in the upper part of his right tibia. The tumor is about 7 cm. It hasn't spread anywhere else, and one of the doctors said it would be about stage 2b.
How did you find out?
For a month or even two, Steven has been walking with a limp. It has mostly been very mild and I thought it was an injury. In the week before I took him in, it had gotten worse. He said it didn't hurt him , but one evening I saw him dressing for bed and near his knee was very swollen. I called the pediatrician the next morning and he took an X-ray. When the doctor got the results he sat us down in the office and told us it was a tumor and it looked serious. I had a hard time processing this--I still had 'injury' going through my mind.
The pediatrician called the children's hospital and they sent us there right away for an MRI and C.T. scan. The nurse wrote down the clinic where we needed to go---it was the hematology/oncology clinic. When I read that paper it finally hit me that they thought he had cancer. That had to be the scariest, hardest days of my life so far. I didn't sleep that night and then the next day Steven had a biopsy and a port placed in his chest for his chemo. The biopsy results confirmed that he has osteosarcoma.
What is the treatment like?
Steven will first have 10 weeks of chemotherapy. After that, an orthopedic surgeon will remove the tumor and do either a bone reconstructive surgery or amputate his leg. When they remove the tumor, they will examine it to see how many of the cells have died and at that time will give us a more accurate prognosis. Depending on the tumor's response to the chemo, he will have either 20 weeks of the same kinds of chemo, or they will add two new drugs and continue the therapy for 30 weeks. He will start physical therapy shortly after the surgery as well.
The chemotherapy involves three drugs: Cisplatin, Doxorubicin, and Methotrexate. The first two he takes together and receives an infusion at the hospital. He will have a break of about 2 1/2 weeks and then will return for an infusion of Methothrexate. Although the Methotrexate infusion only lasts for about 4 hours, he stays in the hospital for 2-5 days until it is flushed from his body. He'll come back the next week for another round of Methotrexate and then start the cycle again.
What are the side effects?
There are so many side effects that it is downright scary. The main ones are nausea, vomiting, hair loss and mouth sores. A serious result of the chemo is that it kills off blood cells and so they keep very close tabs on those. He will have to come in for blood transfusions when his red blood cell and plama counts are very low and when his white blood cell counts are low, he is at risk for infection. The docs say that all patients at some point end up in the hospital with fevers and are treated for a bacterial infection--some more than others. Let's hope it is infrequent for Steven.
Will he be able to go to school and church?
The doctors really encourage us to keep life as normal as we can. He can go to school if he feels well and his white blood cell counts are high enough. He will need to avoid crowds, especially when his counts are low, but can always go outside.
How is he doing?
He started with the chemo on Thursday and has done a lot of sleeping. He doesn't feel like eating and has thrown up a few times. I can tell that he is nervous and scared about what is going to happen. He understands that he needs the chemotherapy to beat the cancer and finds some solace in the video game console in his hospital room. Right now he is listening to music on his iPad and has been smiling. But mostly he has been sleeping the last few days.
How are you doing?
I can't even begin to describe how scary and nerve-wracking the last week has been. I have never in my life been so scared. The first and second days were by far the worst. Slowly, I am trying to come to grips with this new reality. I really have felt the love and prayers of so many of you. To make this week even harder, we found out that my little sister's melanoma is back. She has been a huge support for us and even for Steven. They are determined to beat cancer together.
What can I do to help?
We really will need help. We are looking at lots of hospital stays in the next year. I really do have a great support system between family, church and friends. Thanks for all the prayers and thoughts. Everything is so helpful. As far as Steven goes, he loves cards in the mail, comments on the blog and facebook, visits (these might be limited depending on blood counts and things), and phone calls from his close friends and family. Thank you, everyone, for your concern. This is going to be a very hard year.
Steven's orthepedic surgeon said to him, "People ask me, 'Will I be the same after this is over?' I tell them, 'No, you won't be the same. You will be so much stronger. You will be awesome. "
What is Steven's diagnosis?
Steven has been diagnosed with osteosarcoma, a rare cancer in the bone usually found in children and adolescents. The tumor is in the upper part of his right tibia. The tumor is about 7 cm. It hasn't spread anywhere else, and one of the doctors said it would be about stage 2b.
How did you find out?
For a month or even two, Steven has been walking with a limp. It has mostly been very mild and I thought it was an injury. In the week before I took him in, it had gotten worse. He said it didn't hurt him , but one evening I saw him dressing for bed and near his knee was very swollen. I called the pediatrician the next morning and he took an X-ray. When the doctor got the results he sat us down in the office and told us it was a tumor and it looked serious. I had a hard time processing this--I still had 'injury' going through my mind.
The pediatrician called the children's hospital and they sent us there right away for an MRI and C.T. scan. The nurse wrote down the clinic where we needed to go---it was the hematology/oncology clinic. When I read that paper it finally hit me that they thought he had cancer. That had to be the scariest, hardest days of my life so far. I didn't sleep that night and then the next day Steven had a biopsy and a port placed in his chest for his chemo. The biopsy results confirmed that he has osteosarcoma.
What is the treatment like?
Steven will first have 10 weeks of chemotherapy. After that, an orthopedic surgeon will remove the tumor and do either a bone reconstructive surgery or amputate his leg. When they remove the tumor, they will examine it to see how many of the cells have died and at that time will give us a more accurate prognosis. Depending on the tumor's response to the chemo, he will have either 20 weeks of the same kinds of chemo, or they will add two new drugs and continue the therapy for 30 weeks. He will start physical therapy shortly after the surgery as well.
The chemotherapy involves three drugs: Cisplatin, Doxorubicin, and Methotrexate. The first two he takes together and receives an infusion at the hospital. He will have a break of about 2 1/2 weeks and then will return for an infusion of Methothrexate. Although the Methotrexate infusion only lasts for about 4 hours, he stays in the hospital for 2-5 days until it is flushed from his body. He'll come back the next week for another round of Methotrexate and then start the cycle again.
What are the side effects?
There are so many side effects that it is downright scary. The main ones are nausea, vomiting, hair loss and mouth sores. A serious result of the chemo is that it kills off blood cells and so they keep very close tabs on those. He will have to come in for blood transfusions when his red blood cell and plama counts are very low and when his white blood cell counts are low, he is at risk for infection. The docs say that all patients at some point end up in the hospital with fevers and are treated for a bacterial infection--some more than others. Let's hope it is infrequent for Steven.
Will he be able to go to school and church?
The doctors really encourage us to keep life as normal as we can. He can go to school if he feels well and his white blood cell counts are high enough. He will need to avoid crowds, especially when his counts are low, but can always go outside.
How is he doing?
He started with the chemo on Thursday and has done a lot of sleeping. He doesn't feel like eating and has thrown up a few times. I can tell that he is nervous and scared about what is going to happen. He understands that he needs the chemotherapy to beat the cancer and finds some solace in the video game console in his hospital room. Right now he is listening to music on his iPad and has been smiling. But mostly he has been sleeping the last few days.
How are you doing?
I can't even begin to describe how scary and nerve-wracking the last week has been. I have never in my life been so scared. The first and second days were by far the worst. Slowly, I am trying to come to grips with this new reality. I really have felt the love and prayers of so many of you. To make this week even harder, we found out that my little sister's melanoma is back. She has been a huge support for us and even for Steven. They are determined to beat cancer together.
What can I do to help?
We really will need help. We are looking at lots of hospital stays in the next year. I really do have a great support system between family, church and friends. Thanks for all the prayers and thoughts. Everything is so helpful. As far as Steven goes, he loves cards in the mail, comments on the blog and facebook, visits (these might be limited depending on blood counts and things), and phone calls from his close friends and family. Thank you, everyone, for your concern. This is going to be a very hard year.
Steven's orthepedic surgeon said to him, "People ask me, 'Will I be the same after this is over?' I tell them, 'No, you won't be the same. You will be so much stronger. You will be awesome. "
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