Steven is doing really well. He hasn't been on pain medications since before he went into chemo. His only complaint has been from the nerves in his leg. He is now on Neurontin, a nerve medication. When I ask Steven how it is working, he says, "Well, the nerves are getting better, but I don't know if it is the medicine or if they are just getting better." Good point.
In the couple of weeks after the surgery, he didn't want anyone to get close to his toes because he said the nerves would just start going crazy. His latest nerve complaint made me laugh: I got him a stack of books from the library the other day. He loves nonfiction books from the juvenile section, so I had all sorts of books, including some about bionics, medicine, and cells. He tried to read them, but he said that reading them made his leg hurt, especially the book that talked about the history of surgery. Maybe the thought of amputation without anesthesia is just too much right now.
We've had to start up the nuepogen shots again. He seems to have lost all trust in his mother for giving shots. We had some shaky moments last time around, but I think we have got it down now. They are working--his ANC was over 7000 this morning. It will probably dive down to zero by Thursday, though. His platelets and red blood counts (which aren't helped by the neupogen) are going down.
On Sunday morning I was looking at him and thought--what is different here? It looked like he had eyeliner on. I realized that his eyelashes were coming back. I guess the chemo break let his hair grown in a bit. It will be gone in a week or so, but at least we know it will come back fast.
He's getting around better now, too. I wasn't home, but he tells me that yesterday he hopped from his chair in the living room into my room and back without crutches or holding onto anything. He told me that he is going to be very good at yoga when this will all over.
Monday, May 30, 2011
Friday, May 27, 2011
Some pictures
Here is Steven on Tuesday. He really only smiled for the therapy pets while we were in the hospital. This one is Emily.
Here is Steven with Liberty.
A chemo evening with Cisplatin and Doxyrubicin. Those brown bags hanging are covering the bags of chemo. He basically watched movies for three days straight. He did not feel well.
Steven posing as The Thinker. He's feeling pretty good today.
Here we are off-roading at Wheeler Farm.
Here is Steven with Liberty.
A chemo evening with Cisplatin and Doxyrubicin. Those brown bags hanging are covering the bags of chemo. He basically watched movies for three days straight. He did not feel well.
Steven posing as The Thinker. He's feeling pretty good today.
Here we are off-roading at Wheeler Farm.
Tuesday, May 24, 2011
Back to chemo
And we are back. It's been almost a month since we were last here for chemo. Steven was feeling good today and even has a bit of hair coming in. I had mixed feelings about starting this again--I'm thrilled that it is working, but it is so hard to do. We had almost accepted chemo as a normal life routine. But it was an easy routine to let go and a hard one to pick up again. It is so hard to be apart from the rest of my family.
This morning we came bright and early to see the surgeon. Dr. Jones took out the sutures and replaced Steven's cast. He told Steven that he was as hard as nails, because Steven sat and watched him pull them out with hardy a flinch. Seeing his leg without the cast was a bit hard for me--there is no pretending when you see it in the flesh. His foot is on backward. Steven claims he was unaffected by the sight, but he was shaking as he looked at his leg. It is going to take some getting used to. It is now cast in flourescent green, just in case it wasn't eye-catching enough!
Before he started chemo, Steven had another hearing test. One of the potential side effects of Cisplatin is that it can damage some of the hair cells in the ear that help process sound. It doesn't happen to everyone, but it is happening to Steven. So far his hearing loss is considered mild to moderate in the higher frequencies and at this point he shouldn't need a hearing aide. However, we still have two more rounds of Cisplatin (we've had two already) and so he could lose more hearing. We both left the audiologists feeling a little down. I think "loss" is the best word to describe how we felt.
On a brighter note, he also had an echocardiogram to test his heart function (Doxyrubicin can affect heart function). That looked good--whatever they tested today got a higher score than his baseline, so that is good news. If I had to pick between the two side effects, I would pick the hearing loss. Not that we are out of the water for that either--they will keep testing.
Something else I learned today is that since Cisplatin eventually drops out of the regimen, so we may be able to push some weeks a little closer and finish up a few weeks earlier than we thought. If all goes well, we could be done by the end of September. And, once Cisplatin is gone, he may get to do the Doxyrubicin as an at-home infusion.
I wish I could say that I can almost believe that this will end. But that is hard since I can't even think ahead to tomorrow. While we were stroking some pet therapy dogs today and Steven was beaming, I could almost see him four months from now with his own dog and a stubble of hair and feeling as good as he did this morning, maybe better.
This morning we came bright and early to see the surgeon. Dr. Jones took out the sutures and replaced Steven's cast. He told Steven that he was as hard as nails, because Steven sat and watched him pull them out with hardy a flinch. Seeing his leg without the cast was a bit hard for me--there is no pretending when you see it in the flesh. His foot is on backward. Steven claims he was unaffected by the sight, but he was shaking as he looked at his leg. It is going to take some getting used to. It is now cast in flourescent green, just in case it wasn't eye-catching enough!
Before he started chemo, Steven had another hearing test. One of the potential side effects of Cisplatin is that it can damage some of the hair cells in the ear that help process sound. It doesn't happen to everyone, but it is happening to Steven. So far his hearing loss is considered mild to moderate in the higher frequencies and at this point he shouldn't need a hearing aide. However, we still have two more rounds of Cisplatin (we've had two already) and so he could lose more hearing. We both left the audiologists feeling a little down. I think "loss" is the best word to describe how we felt.
On a brighter note, he also had an echocardiogram to test his heart function (Doxyrubicin can affect heart function). That looked good--whatever they tested today got a higher score than his baseline, so that is good news. If I had to pick between the two side effects, I would pick the hearing loss. Not that we are out of the water for that either--they will keep testing.
Something else I learned today is that since Cisplatin eventually drops out of the regimen, so we may be able to push some weeks a little closer and finish up a few weeks earlier than we thought. If all goes well, we could be done by the end of September. And, once Cisplatin is gone, he may get to do the Doxyrubicin as an at-home infusion.
I wish I could say that I can almost believe that this will end. But that is hard since I can't even think ahead to tomorrow. While we were stroking some pet therapy dogs today and Steven was beaming, I could almost see him four months from now with his own dog and a stubble of hair and feeling as good as he did this morning, maybe better.
Monday, May 23, 2011
The very best news of my whole entire life
This day has been jam-packed. As I go to bed tonight, I am feeling so overwhelmed with happiness and gratitude and information and... I don't know, just everything! I can't stop crying and I have a major headache. I guess maybe I just want to burst with joy (and maybe a good deal of stress, as well).
So the best news of the day is that we got the pathology report from Steven's tumor and the necrosis (cell death in the tumor) was 91%! The margins were negative (which means they got it all). I can't remember what I've written, but we were hoping for anything greater than 90%. This means that we get the "short" track of chemo, which is 20 more weeks (that translates to 12 rounds). It will be the same kinds of chemo that he has done already. And best of all, my understanding is that his prognosis is significantly better. I only spoke briefly with the surgeon about the results, so I don't have more details. But this is great news. In fact, when I told Steven, he was radiant. He said, "This is the very best news I've ever heard in my whole entire life!"
We had fun taking down 70 days worth of links from his chemo chain--days he would have done had the tumor responded poorly. Addie and her cousin walked around with them on their heads pretending they were long locks of hair that dragged on the floor.
In other news (literaly), the local news did a story on Tim, the boy who had rotationplasty the week before Steven did. If you haven't seen it yet, you can watch it here. Steven stayed up to watch it on the 10 o'clock news and got a kick out of seeing Dr. Jones on TV. Maybe staying up late was the ticket, because he finally slept through the night last night. Celebrate! Now if only I could get Laura to... .
We spoke with a prosthetist at Hanger, a company here which has been highly recommended. We learned a lot and to make a long story short, they honestly thought we would do just as well or better by going to Shriners. The amputees (and parents) I've spoken to have varying opinions on the matter, it is so hard to sort everything out. Nothing has been firmly decided here, but my goal is to get the best fit for Steven and if Shriners is the one to do it, then that is where we will go.
And once again I'm bursting with gratitude. So many people have shown us so much support in so many ways. I'm starting to sound kind of cliche here, but seriously, how do I even begin to express my gratitude? I could dedicate a whole blog just to thank people for helping us and then update it several times a day. This is a pretty poor attempt, but THANK YOU!
So the best news of the day is that we got the pathology report from Steven's tumor and the necrosis (cell death in the tumor) was 91%! The margins were negative (which means they got it all). I can't remember what I've written, but we were hoping for anything greater than 90%. This means that we get the "short" track of chemo, which is 20 more weeks (that translates to 12 rounds). It will be the same kinds of chemo that he has done already. And best of all, my understanding is that his prognosis is significantly better. I only spoke briefly with the surgeon about the results, so I don't have more details. But this is great news. In fact, when I told Steven, he was radiant. He said, "This is the very best news I've ever heard in my whole entire life!"
We had fun taking down 70 days worth of links from his chemo chain--days he would have done had the tumor responded poorly. Addie and her cousin walked around with them on their heads pretending they were long locks of hair that dragged on the floor.
In other news (literaly), the local news did a story on Tim, the boy who had rotationplasty the week before Steven did. If you haven't seen it yet, you can watch it here. Steven stayed up to watch it on the 10 o'clock news and got a kick out of seeing Dr. Jones on TV. Maybe staying up late was the ticket, because he finally slept through the night last night. Celebrate! Now if only I could get Laura to... .
We spoke with a prosthetist at Hanger, a company here which has been highly recommended. We learned a lot and to make a long story short, they honestly thought we would do just as well or better by going to Shriners. The amputees (and parents) I've spoken to have varying opinions on the matter, it is so hard to sort everything out. Nothing has been firmly decided here, but my goal is to get the best fit for Steven and if Shriners is the one to do it, then that is where we will go.
And once again I'm bursting with gratitude. So many people have shown us so much support in so many ways. I'm starting to sound kind of cliche here, but seriously, how do I even begin to express my gratitude? I could dedicate a whole blog just to thank people for helping us and then update it several times a day. This is a pretty poor attempt, but THANK YOU!
Sunday, May 22, 2011
We've had a nice weekend--Steven continues to do well. We LOVED the sunshine. We got him outside to enjoy it a little bit with a hammock and a waterfight. (He covered his cast, sat by the water source and wouldn't let anyone get him wet.) I'm not feeling particularly inspired tonight to write anything, but I did want to share this video clip about a bone cancer survivor and amputee. We saw this shortly after Steven was diagnosed and it really has been an inspiration to us.
Friday, May 20, 2011
School
I've been trying to get Steven up to school this week, just so the kids could see him and he could feel their support despite his new look. We finally agreed on this afternoon--right before school let out. As the time drew nearer, he was getting pretty anxious. He reluctantly got in the car and off we went. We drove up to the school just as his class was coming in from recess. His friend saw him in the van and showed the other kids and they were so excited, they were practically cheering. He just lit up and wanted out of the van as fast as he could. I think it was still awkward when we first walked in, but he did it and I think it was a huge boost for him. Some of the kids signed his cast, he's got quite the collection of autographs now.
I've spent the week trying to make progress in many areas of life, but mostly I've been researching prosthetics and prosthetists. I've spoken with amputees and rotationplasty families. I'm getting closer--I've got a consult with a highly recommended prosthetist on Monday. I've spoken with a prosthetist who has fit many rotationplasty patients (and is one himself). Sadly, he lives in Georgia, but he is willing to work with whomever we choose. One thing I have decided is that having a good leg is going to be essential in getting Steven active again. Now to figure out who will make the best leg.
Steven starts chemo again on Tuesday. It's so soon! But we can't give the cancer a break. As oppressive as it seems, it is our ticket to life so we will show up.
I've spent the week trying to make progress in many areas of life, but mostly I've been researching prosthetics and prosthetists. I've spoken with amputees and rotationplasty families. I'm getting closer--I've got a consult with a highly recommended prosthetist on Monday. I've spoken with a prosthetist who has fit many rotationplasty patients (and is one himself). Sadly, he lives in Georgia, but he is willing to work with whomever we choose. One thing I have decided is that having a good leg is going to be essential in getting Steven active again. Now to figure out who will make the best leg.
Steven starts chemo again on Tuesday. It's so soon! But we can't give the cancer a break. As oppressive as it seems, it is our ticket to life so we will show up.
Wednesday, May 18, 2011
Some good questions
Last week while Rob was at the hospital with Steven, I snuck away to go talk to his class and explain rotationplasty to them. I tried to stress how rare his cancer is and I gave them an update on how he was doing. I briefly explained that he could have had his leg amputated or we could have tried to save the leg, but we had chosen rotationplasty. Then I shared the Mayo Clinic video and asked, "Does anyone have any questions?" Of course, most of their hands shot up and they had some really good questions like, "Why is that better than the operation where you save the leg?" "What did they do with the part they cut off?" and "How will he sleep?" and of course, "When will he come back to school?"
Someone asked, "When will his hair grow back? Because I think he should keep that hairstyle--it looks really cool." Also, "What color will his hair be when it grows back?" Toward the end, his teacher said, "Class, Steven is going to be the same person even though he will look different. He will be the same Steven and he will want to be treated the same." One girl raised her hand and said, "Excuse me, but I don't think Steven is the same person. I think he is much, much braver." So precious.
One of the last questions I took was from a teary eyed girl. "I just want to know, why are there so many scary things in the world?" Oh boy--I didn't have a good answer for that one. In fact, her question is haunting me this week. Seriously, why? Some of the friends I've made at the hospital are seeing this scary stuff right now. My heart goes out to Tanner's family. He passed away on Saturday after his battle with lukiemia--it was a secondary cancer from his treatment for Non-Hodgkin Lymphoma. Also, cute little Andrew with AML is in the PICU and is having a hard time. It seems so unfair that these innocent kids have to suffer--I can only imagine how hard it is for their parents.
Now for some positive news--Steven continues to go forward in good spirits and is feeling pretty well. The swelling must be going down in his foot, because he says it feels like the nerves are waking up and sometimes feels like they are going crazy. Last night he crutched into my room at midnight to tell me that he couldn't sleep. It totally surprised me--that really might be the first time since he was a baby that he has woken me up in the middle of the night. The kid is the soundest sleeper and even more so when he is sick. I rubbed his good leg and gave him some pain medication. Something must have worked, because he slept well the rest of the night.
The rainy day(s) hasn't helped anything around here. We did manage to escape the house for a trip to the library. Steven is now working on a huge new stack of books. He is so lucky that he likes to read--what a blessing when you are bed bound. Luckily, I don't have a good excuse to sit in bed all day and read, but I admit that I did it anyway. I had 101 other really important things to do--probably most importantly I should have spent more time with my kids. But this rain! This cancer! Why do they get me down?!
Someone asked, "When will his hair grow back? Because I think he should keep that hairstyle--it looks really cool." Also, "What color will his hair be when it grows back?" Toward the end, his teacher said, "Class, Steven is going to be the same person even though he will look different. He will be the same Steven and he will want to be treated the same." One girl raised her hand and said, "Excuse me, but I don't think Steven is the same person. I think he is much, much braver." So precious.
One of the last questions I took was from a teary eyed girl. "I just want to know, why are there so many scary things in the world?" Oh boy--I didn't have a good answer for that one. In fact, her question is haunting me this week. Seriously, why? Some of the friends I've made at the hospital are seeing this scary stuff right now. My heart goes out to Tanner's family. He passed away on Saturday after his battle with lukiemia--it was a secondary cancer from his treatment for Non-Hodgkin Lymphoma. Also, cute little Andrew with AML is in the PICU and is having a hard time. It seems so unfair that these innocent kids have to suffer--I can only imagine how hard it is for their parents.
Now for some positive news--Steven continues to go forward in good spirits and is feeling pretty well. The swelling must be going down in his foot, because he says it feels like the nerves are waking up and sometimes feels like they are going crazy. Last night he crutched into my room at midnight to tell me that he couldn't sleep. It totally surprised me--that really might be the first time since he was a baby that he has woken me up in the middle of the night. The kid is the soundest sleeper and even more so when he is sick. I rubbed his good leg and gave him some pain medication. Something must have worked, because he slept well the rest of the night.
The rainy day(s) hasn't helped anything around here. We did manage to escape the house for a trip to the library. Steven is now working on a huge new stack of books. He is so lucky that he likes to read--what a blessing when you are bed bound. Luckily, I don't have a good excuse to sit in bed all day and read, but I admit that I did it anyway. I had 101 other really important things to do--probably most importantly I should have spent more time with my kids. But this rain! This cancer! Why do they get me down?!
Monday, May 16, 2011
Another good day. He is in good spirits. I really think he is happier than he has been since this all started. I don't know if it is the wii I finally allowed Rob to give him, or that he's been off the chemo for over two weeks. He practiced the piano this morning and did a little cancer research. Before you think he is so disciplined, know that he couldn't play the wii at all until he had practiced. Before lunch, we went to the park--beautiful.
Saturday, May 14, 2011
Doing great
If Steven weren't so attatched to his chair, you would hardly know he had surgery earlier this week. This morning I heard crutches and doors shutting, and he had gotten himself up and to the bathroom. I went jogging a little later and saw some toys at a garage sale he and Andrew would like. I came back to the house and asked Andrew if he wanted to go to the garage sale with me. Steven was like, "I do! Can you push me in the wheelchair?" He was cheerful and happy. He did ask to cover his leg with a blanket. Later in the day, he crutched outside to say hi to our neighbor over the fence and to ask her to sign his cast. He has only had one dose of pain meds since 6 am this morning. I'm kind of floored by how quickly he is recovering. As my aunt pointed out this morning--he's an outlier on the healing bell curve. Lucky him and lucky us!
Friday, May 13, 2011
Surgery
I have long been trying to muster the energy to recap the details of the surgery. I should clarify--the details of the surgery according to me. Keep in mind that I have no medical background and I have been the stressed parent listening to the doctors, so if I say something wrong, I'm sorry. I will do my best. Also, you may want to pass on this post if you get squeamish! I will tell you what I know about Steven's rotationplasty.
Before the surgery, we met with the surgeon to clear up any concerns and also so that he could measure all of us. He needed to estimate how tall Steven will be, and how long his femur will eventually be. He figured out how many inches taller than average Rob and I are, then he averaged that number. I believe he did the same with our femur length. He told us that 2/3 of the growth of leg comes from the two growth plates that Steven would be losing, and 1/3 comes from the top of the femur and bottom of the tibia combined. That had to do with the calculations as well. I'm not even sure what the final number was, but whatever it was, he is counting from the center of motion of the ankle, so it looks farther out than it functionally is.
That morning, we went to the hospital and the doctor came and signed the leg with the tumor. His surgeon would be the main one working, but he would have an orthopedic fellow and a resident assisting him. Steven didn't seem terribly worried. The nurses offered him some kind of relaxant like Atavan, but he said he didn't need anything. He had his electronic stress control, the iPad to keep him company. We walked down to the hall to take him to the OR. The anesthesiologist had to remind me to give him a hug. Yes, I am that good of a mom. :) Steven was talking to the anesthesiologist up until he went to sleep.
I think that my biggest fear during the whole surgery was whether or not he was operating on the correct leg. It was one of those "did I turn the iron off" kind of obsessive/compulsive worries. I even made Rob ask the nurse during the surgery if he was operating on the right leg. The nurse would call us every 2 hours or so with updates. The doctor had strongly recommended that we not stay at the hospital all day. I thought I would be able to for at least most of the day, but it turned out that I could hardly stay there at all. I wish I could say we did something amazing during that time. I went home and showered, exercised, straighted up, packed. Rob stood vigil. I came back and we went out to lunch with Rob's dad. I talked on the phone a little. He played with the iPad. Later, I went shopping with my sister and he went to get a CD player installed in our van. We then went out to dinner with my parents. I was shocked that I was able to eat that day. I was mostly pretty calm all day. After dinner that changed. My dad stayed to wait with us. We were the last people in the waiting room and around 6:15, the nurse told me that they were just finishing up and the doctor would be in shortly. I believe it was more like 7:45 when he came in. By then I was ready to crawl out of my skin.
What a relief when we finally heard him coming into the room! His big smile melted away my anxiety. He said, "It couldn't have gone any better," and that Steven would recover in the ICU. I will try to describe what I know about the surgery, but like I said, I may be wrong.
Most of the time of the surgery was spent dissecting out the veins and nerves. These were kept intact, not cut. There was some question with one of the nerves whether it would survive because it was so close to the cancer. Luckily, there was a 2cm margin and the surgeon was able to save it. When the nurse called me at 3:30, she said they were still in this phase of the surgery but that they were getting close to finishing that. The nerves are very small and it is a very meticulous work.
Once this was done, they could cut out the bone. I am thinking that the dissecting included taking out the muscle surrounding the bone, but I guess no one ever told me. The bone was cut just about the knee, and then wherever they calculated they needed to cut on the tibia to make the limb the proper length. Once the bone was taken out, they rotated the foot. He bored holes in the femur to fit the tibia and the fibula. He used a metal plate and 5 screws to secure the bones together. Those will be there for life. I'm not exactly sure the order of the next things, but the muscles were sewn together with non-dissolvable sutures. The slack in the veins and nerves were kind of bundled in a switchback sort of pattern. They used a flap of muscle from his calf to cover up this "bundle" of nerves and veins. For a while, there will be a bulge on his leg from this, but it will eventually atrophy and smooth out. I have not seen the leg under the bandages, but the doctor tells us that there is only one incision that circumscribes the leg in a circle. The soft tissues are stitched with dissolvable sutures.
This morning when the doctor looked at Steven's leg, he decided that the swelling had subsided enough to cast it. At first, it was just very bandaged up. As far as the cancer goes, he said that the tumor seemed hard, which is good, but other than that he cannot tell how it responded to the chemotherapy. He took it to pathology who will use a band saw to make about 20 cross sections. They will then decalcify the specimens and examine them carefully to see what percentage of the cancer cells have died. If there is 90% necrosis (cell death) or more, it will be considered a good response. He will then have 20 more weeks of the same chemotherapy regimin that he has already been on. If there is less than 90% necrosis, Steven will need to do 30 more weeks of chemo, and they will add two new kinds of chemo onto the schedule.
So, there is my best attempt to explain. Please let me know if you have specific questions and I can see if I know the answer. I am literally amazed that this is even possible. I'm thankful to the surgeon--he is my hero. I am thrilled that the cancer is gone. Rob said it was hard for him to first look at Steven in the ICU, but it didn't take long for him to become accustomed to his new leg. I don't know why it wasn't hard for me. Maybe because I have watched every rotationplasty video on Youtube four times and I've poured over Google image rotationplasty images. Or maybe it is unconditional mother love or God giving me strength.
I am so happy to have Steven home with us now! It just makes life so much easier to have the family together instead of scattered throughout the valley. Steven is doing really well--he is crutching himself to the bathroom and really is acting like himself again. (He tends to get kind of agitated when he is in pain.) He will have an appointment in a week an a half where the surgeon will decide if he has healed up enough to start chemotherapy again.
Before the surgery, we met with the surgeon to clear up any concerns and also so that he could measure all of us. He needed to estimate how tall Steven will be, and how long his femur will eventually be. He figured out how many inches taller than average Rob and I are, then he averaged that number. I believe he did the same with our femur length. He told us that 2/3 of the growth of leg comes from the two growth plates that Steven would be losing, and 1/3 comes from the top of the femur and bottom of the tibia combined. That had to do with the calculations as well. I'm not even sure what the final number was, but whatever it was, he is counting from the center of motion of the ankle, so it looks farther out than it functionally is.
That morning, we went to the hospital and the doctor came and signed the leg with the tumor. His surgeon would be the main one working, but he would have an orthopedic fellow and a resident assisting him. Steven didn't seem terribly worried. The nurses offered him some kind of relaxant like Atavan, but he said he didn't need anything. He had his electronic stress control, the iPad to keep him company. We walked down to the hall to take him to the OR. The anesthesiologist had to remind me to give him a hug. Yes, I am that good of a mom. :) Steven was talking to the anesthesiologist up until he went to sleep.
I think that my biggest fear during the whole surgery was whether or not he was operating on the correct leg. It was one of those "did I turn the iron off" kind of obsessive/compulsive worries. I even made Rob ask the nurse during the surgery if he was operating on the right leg. The nurse would call us every 2 hours or so with updates. The doctor had strongly recommended that we not stay at the hospital all day. I thought I would be able to for at least most of the day, but it turned out that I could hardly stay there at all. I wish I could say we did something amazing during that time. I went home and showered, exercised, straighted up, packed. Rob stood vigil. I came back and we went out to lunch with Rob's dad. I talked on the phone a little. He played with the iPad. Later, I went shopping with my sister and he went to get a CD player installed in our van. We then went out to dinner with my parents. I was shocked that I was able to eat that day. I was mostly pretty calm all day. After dinner that changed. My dad stayed to wait with us. We were the last people in the waiting room and around 6:15, the nurse told me that they were just finishing up and the doctor would be in shortly. I believe it was more like 7:45 when he came in. By then I was ready to crawl out of my skin.
What a relief when we finally heard him coming into the room! His big smile melted away my anxiety. He said, "It couldn't have gone any better," and that Steven would recover in the ICU. I will try to describe what I know about the surgery, but like I said, I may be wrong.
Most of the time of the surgery was spent dissecting out the veins and nerves. These were kept intact, not cut. There was some question with one of the nerves whether it would survive because it was so close to the cancer. Luckily, there was a 2cm margin and the surgeon was able to save it. When the nurse called me at 3:30, she said they were still in this phase of the surgery but that they were getting close to finishing that. The nerves are very small and it is a very meticulous work.
Once this was done, they could cut out the bone. I am thinking that the dissecting included taking out the muscle surrounding the bone, but I guess no one ever told me. The bone was cut just about the knee, and then wherever they calculated they needed to cut on the tibia to make the limb the proper length. Once the bone was taken out, they rotated the foot. He bored holes in the femur to fit the tibia and the fibula. He used a metal plate and 5 screws to secure the bones together. Those will be there for life. I'm not exactly sure the order of the next things, but the muscles were sewn together with non-dissolvable sutures. The slack in the veins and nerves were kind of bundled in a switchback sort of pattern. They used a flap of muscle from his calf to cover up this "bundle" of nerves and veins. For a while, there will be a bulge on his leg from this, but it will eventually atrophy and smooth out. I have not seen the leg under the bandages, but the doctor tells us that there is only one incision that circumscribes the leg in a circle. The soft tissues are stitched with dissolvable sutures.
This morning when the doctor looked at Steven's leg, he decided that the swelling had subsided enough to cast it. At first, it was just very bandaged up. As far as the cancer goes, he said that the tumor seemed hard, which is good, but other than that he cannot tell how it responded to the chemotherapy. He took it to pathology who will use a band saw to make about 20 cross sections. They will then decalcify the specimens and examine them carefully to see what percentage of the cancer cells have died. If there is 90% necrosis (cell death) or more, it will be considered a good response. He will then have 20 more weeks of the same chemotherapy regimin that he has already been on. If there is less than 90% necrosis, Steven will need to do 30 more weeks of chemo, and they will add two new kinds of chemo onto the schedule.
So, there is my best attempt to explain. Please let me know if you have specific questions and I can see if I know the answer. I am literally amazed that this is even possible. I'm thankful to the surgeon--he is my hero. I am thrilled that the cancer is gone. Rob said it was hard for him to first look at Steven in the ICU, but it didn't take long for him to become accustomed to his new leg. I don't know why it wasn't hard for me. Maybe because I have watched every rotationplasty video on Youtube four times and I've poured over Google image rotationplasty images. Or maybe it is unconditional mother love or God giving me strength.
I am so happy to have Steven home with us now! It just makes life so much easier to have the family together instead of scattered throughout the valley. Steven is doing really well--he is crutching himself to the bathroom and really is acting like himself again. (He tends to get kind of agitated when he is in pain.) He will have an appointment in a week an a half where the surgeon will decide if he has healed up enough to start chemotherapy again.
Home!
I can hardly believe it myself, but we are writing from home right now! We've been here since just after 12pm and Steven is really doing great. I have lots of stuff to update on. Blogger has been down since yesterday when I tried, so I haven't been able to update. The swelling was down enough when the docs came to see him this morning, that they decided to cast his leg. I've got things to do, but will update more as I have time.
Wednesday, May 11, 2011
Fast progress
Steven has done really well this morning. He ate some cereal for breakfast and lunch and they just started him on oral pain meds. He got into a little trouble with the pain pump this morning because once they stopped the continuous iv pain meds, he would forget to push the pump and then get into trouble because he got behind the pain. Since he is keeping food down and eating and drinking, we decided to switch to the oral meds.
This afternoon he was watching a movie and he couldn't keep his eyes open. My dad snapped this picture on his phone of Steven holding his eye open. At one point he was doing it with both eyes--it was funny.
The physical therapist just stopped by and she helped Steven stand up by the side of the bed three times and then helped him into a chair. He is in a chair right now and playing the Ipad.
He has been touching his foot, lifting his legs, moving his toes. His foot looks pink. He's not a fan of the bandage and wants it off, but of course that isn't an option. He needs to use the crutches for 50 feet and go up and down 6 stairs before he meets his PT goals.
So that is the news from the hospital. Thanks for the comments and emails and facebook notes. You guys are the greatest!
This afternoon he was watching a movie and he couldn't keep his eyes open. My dad snapped this picture on his phone of Steven holding his eye open. At one point he was doing it with both eyes--it was funny.
The physical therapist just stopped by and she helped Steven stand up by the side of the bed three times and then helped him into a chair. He is in a chair right now and playing the Ipad.
He has been touching his foot, lifting his legs, moving his toes. His foot looks pink. He's not a fan of the bandage and wants it off, but of course that isn't an option. He needs to use the crutches for 50 feet and go up and down 6 stairs before he meets his PT goals.
So that is the news from the hospital. Thanks for the comments and emails and facebook notes. You guys are the greatest!
This morning
Rob spent the night at the hospital and I am on my way there now. I never did get the energy to write up what we know about the surgery, but hopefully I will today (or maybe I'll ask Rob to do it).
The report from the hospital is that Steven had a great night. His vitals looked great all night, he is drinking clear liquids. At 4am his catheter was driving him crazy and they pulled it. He isn't even pushing his pain pump as often as he is allowed to. He should be leaving the ICU today, hopefully this morning.
Seeing him last night right after surgery was kind of hard. The new leg was hard, but the hardest for me was how puffy and kind of all around miserable he looked. He was just drugged. He talked to us a little and kept begging for water (he had to wait a while to drink). At one point he was asking me for a bath. I was like, "a bath? I don't think so" and then he realized what he really meant was a drink of water.
The report from the hospital is that Steven had a great night. His vitals looked great all night, he is drinking clear liquids. At 4am his catheter was driving him crazy and they pulled it. He isn't even pushing his pain pump as often as he is allowed to. He should be leaving the ICU today, hopefully this morning.
Seeing him last night right after surgery was kind of hard. The new leg was hard, but the hardest for me was how puffy and kind of all around miserable he looked. He was just drugged. He talked to us a little and kept begging for water (he had to wait a while to drink). At one point he was asking me for a bath. I was like, "a bath? I don't think so" and then he realized what he really meant was a drink of water.
Tuesday, May 10, 2011
The doc just left us and said that everything went as well as could possibly be expected. He was able to save all the nerves and one extra blood vessel than he had expected. There is so much to explain, and I will try to say what I can soon when I have a real keyboard. Steven will be in the icu tonight just to have extra monitoring. Doc feeling really good about everything, so are we. We are so grateful for his amazing work and care. Thanks to all you-- I really felt all your love and support.
Monday, May 9, 2011
The eve of surgery
Today was rainy and cold and I won't deny, a little depressing. I had to take Steven up to the hospital for some pre-surgery labs. I told him he needed to finish up the last of his homework this morning before we left. It was all the "hard" assignments that he's been putting off. He wasn't happy about it. There was one last cursive exercise that he just couldn't bring himself to do. As we were rushing out the door he said, "I'm a little depressed." I stopped for minute and looked at him sypathetically, "Oh, is it the surgery tomorrow?" "No, it's the homework."
Wow, that seems like the least of our problems here! Anyway, he wanted to go to school in the afternoon and he didn't want to miss library day, so we got him up there in time and he even got the book he wanted. He finished it by dinnertime.
We had a nice quiet evening of prayers and family. Somehow we will make it through tomorrow and then the next day. And like every other day, we will go a step at a time.
It sounds kind of crazy, but I really wanted a picture of his legs before the surgery, so here you have them. I can't believe how grateful I am feeling for legs right now--do you all know how lucky we are to have them?
I remember when Steven was just learning to walk. He was only nine months old and he hadn't even learned to balance. I would stand him up and let go and he would just start running. At first he ran straight into the ground and eventually he got a few more steps in before going down. He still didn't know how to crawl but he wanted to walk. It was so crazy to see this little baby with no fear just going for it. That is how he's done a lot of things in his life--he is intensly focused and isn't concerned about perfection--he just wants to get from point A to point B and see what will happen next.
That is my best explanation for his fearlessness about the surgery. He sees it as a step in the process of the cure that has to happen. He will have to learn to walk again and he will fall down many times. But I hope his determination to go places will keep him trying over and over until he has it down.
I will try to keep you posted tomorrow. So many people have lots of questions. Maybe with my longest day ever tomorrow, I can address some of those. We need to be at the hospital at 6am. They will take him into the room around 7:30. My best guess is that he will be in surgery for 8 to 12 hours. We will likely be in the hospital for at least 5 days. And most exciting of all is that by this time tomorrow, that tumor will be history!
Wow, that seems like the least of our problems here! Anyway, he wanted to go to school in the afternoon and he didn't want to miss library day, so we got him up there in time and he even got the book he wanted. He finished it by dinnertime.
We had a nice quiet evening of prayers and family. Somehow we will make it through tomorrow and then the next day. And like every other day, we will go a step at a time.
It sounds kind of crazy, but I really wanted a picture of his legs before the surgery, so here you have them. I can't believe how grateful I am feeling for legs right now--do you all know how lucky we are to have them?
I remember when Steven was just learning to walk. He was only nine months old and he hadn't even learned to balance. I would stand him up and let go and he would just start running. At first he ran straight into the ground and eventually he got a few more steps in before going down. He still didn't know how to crawl but he wanted to walk. It was so crazy to see this little baby with no fear just going for it. That is how he's done a lot of things in his life--he is intensly focused and isn't concerned about perfection--he just wants to get from point A to point B and see what will happen next.
That is my best explanation for his fearlessness about the surgery. He sees it as a step in the process of the cure that has to happen. He will have to learn to walk again and he will fall down many times. But I hope his determination to go places will keep him trying over and over until he has it down.
I will try to keep you posted tomorrow. So many people have lots of questions. Maybe with my longest day ever tomorrow, I can address some of those. We need to be at the hospital at 6am. They will take him into the room around 7:30. My best guess is that he will be in surgery for 8 to 12 hours. We will likely be in the hospital for at least 5 days. And most exciting of all is that by this time tomorrow, that tumor will be history!
Sunday, May 8, 2011
Mother's Day
I've had a bittersweet Mother's Day weekend. When a stranger wishes me a happy mother's day, all weekend I've felt like explaining, that actually, we'd be losing a leg so, no, it would be a hard weekend. But that is the wicked, depressed side of me speaking. You'll be proud of me that I bit my tounge each time and smiled and said, "Thank you."
Mother's day really has been nice, even with the cancer and upcoming surgery looming about. We went to church with Rob's parents and then we went to my mom's house and talked to my brother, Mark, who is on an LDS mission in Barcelona, Spain. It was so nice to visit with most of my siblings. But even with distractions, there is no escaping the cancer. Addie and Andrew's mother's day cards seemed to express our reality (you'll have to excuse the photography on these cards. I'm lazy tonight):
Addie said hers was a picture of me and Steven at the hospital. (By the way, Rob forged the "I love you.")
Andrew's came as part of a darling book he made at school entitled, "All About My Mom". The next page says "sisters."
Cancer has brought a whole new dimension to the love and concern I feel for my kids. I never really understood how painful being a mom could be. And there is a good chance that this won't be the end of my suffering and maybe not even the worst of it. But even with the pain that comes as part of the job, the joy my kids bring me is indescribable.
I am a far cry from perfect. I yell at my kids often and today was no exception. Some of my motherly duties have fallen by the wayside since cancer came along. We eat too much junk food and watch too much TV and my kids do very little chores these days. I hope I will get a second chance here, but in the meantime I do want the best for them and I love them immensely. I guess that is what makes motherhood work--we moms will sacrifice a lot to give our kids the best life we can.
Tonight I want to hold Steven in my arms like I did when he was a baby. I wish I could take away all the pain that he will feel next week. If I could, I would go in his place for the surgery. But since I can't, I hope he can at least go through the trial ahead with a surety that his mom loves him.
P.S. He is still doing well-continues to claim he isn't nervous about the surgery. I'm pretty sure I'm more nervous that he is. He had a great weekend with his aunt Alisa and her kids. She did a much better job of providing fun than I could have. I had a busy and distracting day trying to prep for this crazy week.
Friday, May 6, 2011
100 mph
I feel like I am speeding through this week--I want Tuesday to come so we can get that cancer out of there, but our lives will change forever once it comes and I'm digging my heels in a little about that.
I have so much I could blog about--most interesting to some would be the hour plus meeting with the surgeon. But I don't have the time or the energy to recap it all. I will say that I came out of the conversation with a whole new appreciation of how complicated this is. I watch that rotationplasty video and it looks so simple--cut the leg and then put it back together. But think of the nerves and blood vessles and most impressive to me, the muscles that have to reconnect. I've thought a lot about the bones and them fusing together, but the muscles are really important in order to get the movement he needs. Maybe sometime I can go into more detail. Feel free to ask me questions if there is something specific I can address.
And life goes on. Despite my plans to have tons of fun, there are so many other things to do to get ready. We are still doing housework, going to school, doing homework, potty training, making phone calls to lots of people for lots of reasons, etc. We are trying to make the most of even those commonplace moments and sneak in a few fun ones as well.
I have so much I could blog about--most interesting to some would be the hour plus meeting with the surgeon. But I don't have the time or the energy to recap it all. I will say that I came out of the conversation with a whole new appreciation of how complicated this is. I watch that rotationplasty video and it looks so simple--cut the leg and then put it back together. But think of the nerves and blood vessles and most impressive to me, the muscles that have to reconnect. I've thought a lot about the bones and them fusing together, but the muscles are really important in order to get the movement he needs. Maybe sometime I can go into more detail. Feel free to ask me questions if there is something specific I can address.
And life goes on. Despite my plans to have tons of fun, there are so many other things to do to get ready. We are still doing housework, going to school, doing homework, potty training, making phone calls to lots of people for lots of reasons, etc. We are trying to make the most of even those commonplace moments and sneak in a few fun ones as well.
Wednesday, May 4, 2011
The countdown begins
We are now six days out from surgery. I'm happy to report that Steven is doing well. He's been at school most of the week, though I admit that yesterday he came home pretty tired. He had been there all day. We mustered the energy to bake some cookies--he was in good spirits.
We've been following the story of Tim Wright, a 12-year-old boy with Ewings sarcoma whose mom I met up at the hospital. He has the same surgeon as Steven and his tumor is on his tibia, like Steven. Yesterday he had a rotationplasty. You can read about his surgery here. Steven has asked to check their blog all day to see what they said about the surgery and was very interested in how it went. We are so glad that everything went well for him and wish him a speedy recovery.
Tomorrow morning we meet with the surgeon and we are collecting quite the list of questions. In the meantime, tonight Steven is off to play laser tag with some cousins. We've got to pack in the fun--it will be a while until he is able to do some things like that again.
We've been following the story of Tim Wright, a 12-year-old boy with Ewings sarcoma whose mom I met up at the hospital. He has the same surgeon as Steven and his tumor is on his tibia, like Steven. Yesterday he had a rotationplasty. You can read about his surgery here. Steven has asked to check their blog all day to see what they said about the surgery and was very interested in how it went. We are so glad that everything went well for him and wish him a speedy recovery.
Tomorrow morning we meet with the surgeon and we are collecting quite the list of questions. In the meantime, tonight Steven is off to play laser tag with some cousins. We've got to pack in the fun--it will be a while until he is able to do some things like that again.
Monday, May 2, 2011
Garrison
My sister-in-law's sister goes to church with a boy in Colorado who had a rotationplasty six years ago. I talked to his mom at length the other day about their experience with cancer. Garrison was six years old when he was diagnosed with osteosarcoma. It was very nice to talk to someone who has been in our shoes, and is having such success down the road a little. He is doing great. He plays soccer, basketball, is on his school's jump rope team, does the slip-and-slide and has no problem telling people about his amputation. Here is a picture I found of him on the internet. I love the look on the girl's face.
I don't know if I have the time or you have the interest for me to recount the entire conversation, but here are a few things she told me in no particular order:
We need to install a hand held shower head and get a bench for the shower (I bought one today, we're good)
On wet surfaces, it is easy to slip with a prosthetic foot
Getting a good prosthesist is essential
Garrison needs to get a new leg about every year
Garrison was fit for a prosthetic about four weeks or so after his surgery and a leg a month or two after that
The foot fits into the prosthestic leg in a ballerina point
Wearing the leg as often as possible is important to keep his body used to walking this way
Garrison still uses his crutches sometimes when his leg is off. At first, he crawled a lot, now he kind of walks with his other knee off the ground, bearing weight on both feet. Crawling might be easier, but they want him to preserve his other joint
Seeing his leg after the surgery was really hard for him. The foot on backwards bothered him less than the staples and swelling
His foot still grows
Clipping toenails is essential
He is considered an AKA (above the knee amputee) as far as the paralympics is concerned
This family has no regrets about the rotationplasty and would do it again if he had cancer in his other leg. The whole cancer and amputation experience has taught them a lot and has given him opportunities to do things he never would have otherwise. Talking to her was really inspirational, to see how they have turned such a hard thing into something so positive.
I don't know if I have the time or you have the interest for me to recount the entire conversation, but here are a few things she told me in no particular order:
This family has no regrets about the rotationplasty and would do it again if he had cancer in his other leg. The whole cancer and amputation experience has taught them a lot and has given him opportunities to do things he never would have otherwise. Talking to her was really inspirational, to see how they have turned such a hard thing into something so positive.
Sunday, May 1, 2011
Beautiful day
Things are good today--Steven was home by 10:00am this morning. We all went to church as a family--a rare thing these days. His labs looked really good. The oncologist that discharged us today looked at his lab results and said, "A perfectly healthy boy." I thought it was kind of weird since, oh yeah, he has cancer.
If it weren't for the hair, I could have almost forgot that fact for most of the day. He was in great spirits and we got to have a big family dinner at Rob's parent's house. By 7:00, he was tired and wanted to go home. I guess waking up every couple of hours for three nights in a row, along with chemo, can wear you down. He is planning to go to school this week and we are gearing up for the big surgery on the 10th of May.
His surgeon called yesterday to set up a time to meet with us this week. He said he hadn't seen the scans yet but he had heard good things about them. I liked the sound of that! I mentioned to Steven that we would be coming to meet with the doctor again this week and he said, really matter-of-factly, "Well, I don't need to come. I'm not worried about the surgery." He really doesn't seem to be too worried. That makes me even more worried, is he not processing this? But this is the kid who hasn't missed a thing since he was little so he must understand. We've talked about it at great lengths. He has read books about surgery. He certainly seems to have a lot of faith. I don't know if he has faith in the doctor, in us, in God, in modern medicine or just a big mixture of all of it.
We are hoping to have lots of fun this week to make up for the week stuck in the hospital. I am struck tonight with how lucky we are to be in the hospital for such a short time with methotrexate. The nurse told me that some kids stay for 5 days and then go home for one and come back for the next round. She also told me that most kids need twice the amount of fluids that Steven does to be able to clear it. They call him a "fast clearer." How did we get so lucky? But then, we have cancer, so how did we get so unlucky? It's hard to wrap my mind around things, but in the end, the cancer is here, so I will try to be grateful for the little things that make it easier.
And part of what makes this easier is the love that so many people have shown to us. I don't always have time to thank you or respond to emails or comments, but everything you say and do is so appreciated.
If it weren't for the hair, I could have almost forgot that fact for most of the day. He was in great spirits and we got to have a big family dinner at Rob's parent's house. By 7:00, he was tired and wanted to go home. I guess waking up every couple of hours for three nights in a row, along with chemo, can wear you down. He is planning to go to school this week and we are gearing up for the big surgery on the 10th of May.
His surgeon called yesterday to set up a time to meet with us this week. He said he hadn't seen the scans yet but he had heard good things about them. I liked the sound of that! I mentioned to Steven that we would be coming to meet with the doctor again this week and he said, really matter-of-factly, "Well, I don't need to come. I'm not worried about the surgery." He really doesn't seem to be too worried. That makes me even more worried, is he not processing this? But this is the kid who hasn't missed a thing since he was little so he must understand. We've talked about it at great lengths. He has read books about surgery. He certainly seems to have a lot of faith. I don't know if he has faith in the doctor, in us, in God, in modern medicine or just a big mixture of all of it.
We are hoping to have lots of fun this week to make up for the week stuck in the hospital. I am struck tonight with how lucky we are to be in the hospital for such a short time with methotrexate. The nurse told me that some kids stay for 5 days and then go home for one and come back for the next round. She also told me that most kids need twice the amount of fluids that Steven does to be able to clear it. They call him a "fast clearer." How did we get so lucky? But then, we have cancer, so how did we get so unlucky? It's hard to wrap my mind around things, but in the end, the cancer is here, so I will try to be grateful for the little things that make it easier.
And part of what makes this easier is the love that so many people have shown to us. I don't always have time to thank you or respond to emails or comments, but everything you say and do is so appreciated.
Subscribe to:
Posts (Atom)