Wow--it is crazy how much time can fly and I haven't blogged a thing! Not that life is all that exciting here, but I do have lots of little and big stories that I have been meaning to blog about--some of them for months. It is just like all the other things that have piled up in the last 9 months. I just don't have the time or energy to do it!
So many people ask me how Steven is doing, and I never quite know what they want to know. Physically? He's feeling great. He still has the runny nose that he has dealt with since chemo first started. I'm a little worried it will never go away. He is so much stronger and has much more endurance. His eyebrows and eyelashes are starting to grow in. That added to his pink color makes him look really good. He is still far away from walking. I will have to post more on that later, but he is making progress and it is coming along much faster now that he is off the chemo.
Sometimes I wonder if they are asking about the emotional side of it. I get the feeling they are hinting about the backwards foot. Well, he doesn't seem to care one bit about that. Every once in a while he will make a comment that reminds me that he is very aware that he is different, but those are few and far between and he doesn't let that hold him back from things. Not being able to walk and run with the other kids is the hardest thing emotionally for him, but that shouldn't be a permanent thing. With his new found energy, he is really finding ways to compensate anyway. The other day when I picked him up from school, he was so excited because he had blocked 3 goals in soccer. (Okay, so two were with his crutches, but still!)
I've had many moments where I just think "yes, my Steven is back." We only expect him to get better every day, so things are good. He will get his port out on Thursday and that will be the real end of all things chemo. We are excited for sure.
But even still, life is super busy. I guess that is normal with four little ones, but even more so since we are kind of picking up the pieces of our life. We have let so many things go in the last year. It is really overwhelming to try to figure out what is important and what we need to spend our time doing. For a month, I have had a goal to write a list of all the things I need to do, but even that seems too overwhelming and I haven't done it.
So, as inefficient as it is, I am taking each day one at a time and doing what is necessary to get by. That is how I've been living since this started and I've dreamt of the day when I could get a routine and move forward with things. But perhaps moving forward isn't really as important as I think it is. Maybe one of the lessons I'm supposed to learn from this is how to enjoy life no matter how many dishes are in the sink or how many papers are piled on the counter. I am getting better at that, so I guess I am making progress afterall!
Sunday, October 30, 2011
Tuesday, October 25, 2011
Clean scans!
It's a happy day here--all of Steven's scans were clear. We had a long day that frankly just feels overwhelming to document. Here are all the appointments we had today: prosthetist, orthopedic surgeon, audiologist, nuclear medicine (bone scan), ct scan, xray, and hem/onc clinic. We started at 9 and finish around 4, with about an hour break for lunch. It was a big day full of questions and answers and worries. Happily, in the end we had good news that all is well for Steven. He will get his port out next week sometime and then get scanned every three months for a while. He was really worried about his audiogram, but he did pretty well. He definitely has hearing loss, but not enough to need hearing aides. That could still change, but we'll cross that bridge if we get there.
Monday, October 24, 2011
Random thoughts
Tomorrow is the big day of the scans and I am nervous. The chances of Steven having cancer after just finishing chemo seem to be almost impossible. But if it were impossible, the docs wouldn't scan him and expose him to more radiation, so clearly it could happen. It seems so unlikely, but if he did have cancer, it would be very bad. So maybe that is why I can't relax tonight.
Steven had a fabulous time in Yellowstone. I will post some pictures and details about that soon. The weather cooperated for the most part and so did the little kids. Steven had the most energy of all of us--not wanting to miss a thing. By the end, most of the kids were done with geysers, but not Steven--he was interested until the very end. He was happier than we had seen him since this started--totally in his element. I had to keep that in mind so that I could handle the trip--I was getting grumpy by the end. I had to remind myself that this was Steven's trip to make up for so many lost opportunities throughout the year and to celebrate life. And truly the beauty all around was such a glorious reminder of how wonderful it is to be alive.
This morning we went to the hospital bright and early for his first appointment of the week--this time with a dermatologist. When Steven lost his hair, we noticed a mole that looks a little funny and I decided that the first thing we would do when treatment is over is to get it off. I kind of expected to have to convince the doctor to take it off--I was prepared to be firm. But she didn't need to be talked into it--she gave me some good reasons to take it off and then said, "But I don't want you to worry about this--this is probably nothing." Oh boy! I wasn't worried until she said that! She told me that osteosarcoma patients have a higher risk for melanoma. Is that true? I've been looking on the internet and can't really find anything. Anyway, he will get it off sometime in the next few weeks--after his scans.
My sister has scans this week, too. The stress seems a little excessive--how did they get on the same scan schedule anyway? I know that lots of prayers are heading to heaven this week on our behalf. I just hope that God will see some families in desperate need of peace and health and time together. Is that too much to ask?
Steven had a fabulous time in Yellowstone. I will post some pictures and details about that soon. The weather cooperated for the most part and so did the little kids. Steven had the most energy of all of us--not wanting to miss a thing. By the end, most of the kids were done with geysers, but not Steven--he was interested until the very end. He was happier than we had seen him since this started--totally in his element. I had to keep that in mind so that I could handle the trip--I was getting grumpy by the end. I had to remind myself that this was Steven's trip to make up for so many lost opportunities throughout the year and to celebrate life. And truly the beauty all around was such a glorious reminder of how wonderful it is to be alive.
This morning we went to the hospital bright and early for his first appointment of the week--this time with a dermatologist. When Steven lost his hair, we noticed a mole that looks a little funny and I decided that the first thing we would do when treatment is over is to get it off. I kind of expected to have to convince the doctor to take it off--I was prepared to be firm. But she didn't need to be talked into it--she gave me some good reasons to take it off and then said, "But I don't want you to worry about this--this is probably nothing." Oh boy! I wasn't worried until she said that! She told me that osteosarcoma patients have a higher risk for melanoma. Is that true? I've been looking on the internet and can't really find anything. Anyway, he will get it off sometime in the next few weeks--after his scans.
My sister has scans this week, too. The stress seems a little excessive--how did they get on the same scan schedule anyway? I know that lots of prayers are heading to heaven this week on our behalf. I just hope that God will see some families in desperate need of peace and health and time together. Is that too much to ask?
Wednesday, October 19, 2011
We're off
Steven's labs look great--his blood counts are all within normal ranges for the first time since he started chemo. It shouldn't surprise me so much--he really has seemed liked a whole different kid the last few days. So I guess the trip is on--and I won't even have to worry about things like altitude sickness or bleeding accidents--and likely not even fevers. Keep your fingers crossed that the worst of our problems will be kids that are tired of the car or cold--I think I can handle that.
Tuesday, October 18, 2011
Steven is feeling better every day--which is a huge relief. Last week I was pretty worried that cancer had taken away my sweet boy and left an ornery one in his place. You would think I would have remembered something I've learned over and over again as a parent of four kids--there is usually a good medical reason behind extreme crabbiness. I don't exactly know Steven's reason, but I do know he has had many reasons to not feel well.
At any rate, he is getting used to school and we are getting into some better routines to get his physical therapy done. His favorite new therapy tool is a wii fit. He has to stand on a board and try to balance his weight between both legs--much more fun than trying to make the needle on the scale go up.
I just took this picture. He loves the new hat I bought him him for our Yellowstone trip this weekend. That's right--we are going to attempt Yellowstone. I have some hesitations--like that the high is going to be in the 40s, for instance. But Steven is super excited and we are going to try if nothing else. We've been looking forward to this trip for over four months. I got nervous that chemo wouldn't be finished and would ruin our plans. I guess I should have been more worried about the weather.
Yesterday, we got to visit with my grandma. Steven hadn't seen her since he started his cancer treatments. It was so good to see her--there is nothing like my grandma to make me feel like things will be okay.
At any rate, he is getting used to school and we are getting into some better routines to get his physical therapy done. His favorite new therapy tool is a wii fit. He has to stand on a board and try to balance his weight between both legs--much more fun than trying to make the needle on the scale go up.
I just took this picture. He loves the new hat I bought him him for our Yellowstone trip this weekend. That's right--we are going to attempt Yellowstone. I have some hesitations--like that the high is going to be in the 40s, for instance. But Steven is super excited and we are going to try if nothing else. We've been looking forward to this trip for over four months. I got nervous that chemo wouldn't be finished and would ruin our plans. I guess I should have been more worried about the weather.
Yesterday, we got to visit with my grandma. Steven hadn't seen her since he started his cancer treatments. It was so good to see her--there is nothing like my grandma to make me feel like things will be okay.
Friday, October 14, 2011
What's next?
This is by far the most frequently asked question around here, so I thought I would take a minute to answer it the best I can.
The next step for Steven is that he will have all the scans and tests he has ever had. They will check for any signs of cancer (heaven forbid--that would be bad news indeed, but it is very unlikely since he just finished his chemo treatments.) They check for that with a bone scan, an Xray and a CT scan. They will do an echocardiogram to test his heart function. As I've mentioned before, the Doxorubicin chemo he had can cause heart problems--immediately or years down the road. His heart function will be tested yearly for the rest of his life. He will also have his hearing tested and for the next few weeks will have his blood monitered through regular lab draws.
Once he passes all the cancer tests and his bone marrow has recovered (that is what they are checking with the blood draws), they will schedule a sugery for him to get his port removed. The scan will take place sometime the week of the 24th of October and the port sugery will likely be the week after.
For the next two years, Steven will have scans to check for cancer every three months. After that, it goes to every six months until 5 years from now. Then he will have scans annually for five more years. So it is ten more years until he is considered truly cured. When I think of that, I must admit I feel a little overwhelmed. Maybe by the end I will be a pro at not freaking out, we'll see. It is hard to envision going through ten winters where every cough will scare me to death. (The CT scan they do is of his chest, because with osteosarcoma usually metastisizes to the lungs first.)
So far, this week has been hard. Like I said before, he's been back at school almost full time. He has made a major improvement from Monday to today, so I am feeling hopeful. Next week is fall break, so he only has a few days of school and he'll miss more days the next week for doctors appointments and scans. My hope is that by the end of the month, he'll have more energy and be more like his old self. I'm remembering my kids starting school in the fall and how grumpy they can be for the first week or so and he has had a super long break from school that hasn't exactly been fun. Plus, he's got legitimate physical issues and emotional stuff to deal with. It is a lot for a kid and so keep praying for him--he's got a way to go.
The next step for Steven is that he will have all the scans and tests he has ever had. They will check for any signs of cancer (heaven forbid--that would be bad news indeed, but it is very unlikely since he just finished his chemo treatments.) They check for that with a bone scan, an Xray and a CT scan. They will do an echocardiogram to test his heart function. As I've mentioned before, the Doxorubicin chemo he had can cause heart problems--immediately or years down the road. His heart function will be tested yearly for the rest of his life. He will also have his hearing tested and for the next few weeks will have his blood monitered through regular lab draws.
Once he passes all the cancer tests and his bone marrow has recovered (that is what they are checking with the blood draws), they will schedule a sugery for him to get his port removed. The scan will take place sometime the week of the 24th of October and the port sugery will likely be the week after.
For the next two years, Steven will have scans to check for cancer every three months. After that, it goes to every six months until 5 years from now. Then he will have scans annually for five more years. So it is ten more years until he is considered truly cured. When I think of that, I must admit I feel a little overwhelmed. Maybe by the end I will be a pro at not freaking out, we'll see. It is hard to envision going through ten winters where every cough will scare me to death. (The CT scan they do is of his chest, because with osteosarcoma usually metastisizes to the lungs first.)
So far, this week has been hard. Like I said before, he's been back at school almost full time. He has made a major improvement from Monday to today, so I am feeling hopeful. Next week is fall break, so he only has a few days of school and he'll miss more days the next week for doctors appointments and scans. My hope is that by the end of the month, he'll have more energy and be more like his old self. I'm remembering my kids starting school in the fall and how grumpy they can be for the first week or so and he has had a super long break from school that hasn't exactly been fun. Plus, he's got legitimate physical issues and emotional stuff to deal with. It is a lot for a kid and so keep praying for him--he's got a way to go.
Thursday, October 13, 2011
Party time
Life has come at me fast, that is for sure. I am trying to take it slow, but because I have put off so many things for so long, it is really hard to do. Steven has been at school all week, with the exception of a PT appointment. He seems totally exhausted. I can blog more about that later, but for now, here are some pictures from the party on Monday. (I only took a few and most were out of focus, oh well.)
It was a huge success--most of the kids in Steven's class came, many of them with their families. Rob and I both come from big families and most of our siblings and neices and nephews were there, plus many of our other friends came. There was no exact head count, but we went through 100 hamburgers and 120 hot dogs. It was great to see so many people come and support Steven. I only wish I could have visited longer with everyone!
Thanks to my awesome brother-in-law and his mom for grilling for almost two straight hours!
Here is Steven with a couple of friends from school.
Some friends of ours got him a trophy--he LOVES it! It has "Team Steven" at the top and "Chemo Cup of Courage" at the bottom.
Alton shaved his head to show his support for Steven. Now is hair growing contest time. Bring it on!
We had a really nice time and are so grateful to our families who put the party on for Steven. He has been awfully grumpy at home this week, and this was the one time we saw some real smiles all week. I hope the memory will shine even brighter for him. I know it will be a good one for me. I took the girls to the farm for a picnic today and we sat in the same pavillion--I felt loved just being there and remembering.
It was a huge success--most of the kids in Steven's class came, many of them with their families. Rob and I both come from big families and most of our siblings and neices and nephews were there, plus many of our other friends came. There was no exact head count, but we went through 100 hamburgers and 120 hot dogs. It was great to see so many people come and support Steven. I only wish I could have visited longer with everyone!
Thanks to my awesome brother-in-law and his mom for grilling for almost two straight hours!
Here is Steven with a couple of friends from school.
Some friends of ours got him a trophy--he LOVES it! It has "Team Steven" at the top and "Chemo Cup of Courage" at the bottom.
Alton shaved his head to show his support for Steven. Now is hair growing contest time. Bring it on!
We had a really nice time and are so grateful to our families who put the party on for Steven. He has been awfully grumpy at home this week, and this was the one time we saw some real smiles all week. I hope the memory will shine even brighter for him. I know it will be a good one for me. I took the girls to the farm for a picnic today and we sat in the same pavillion--I felt loved just being there and remembering.
Sunday, October 9, 2011
Bell time!
Steven's last few days at the hospital were fairly eventful. He had lots of visitors--two of the visitors he had been looking forward to for a while. First of all, his cousin James had long wanted to skip a little school to come and "babysit" Steven in the hospital. On Friday he got his wish while Alisa and I headed off to do a bit of shopping.
On Friday night, my brother, Matt, came and had a sleep over and let Rob and I off the hook. They stayed up late playing board games and video games and eating pizza. My brother, Mike, showed up for the party, too. Steven was in heaven.
Saturday morning was a big day--DISCHARGE! First, the nurses all sang to him "Happy Last Chemo!"
Then it was time to ring the bell.
Steven rang it and truly it brought tears to our eyes. One of these days, if I can muster up the energy, I'll post the video of him ringing it.
Goodbye hospital! I know we will be back, but hopefully not for any more chemotherapy.
I have a lot on my mind as we finish this up. I got home yesterday and part of me wanted to crawl into bed and sleep until 2012. I feel like I have run an emotional marathon and now it is time to crash. On the other hand, part of me wanted to start cleaning out my drawers and cupboards and catching up on our budget. In the end, I did neither. I wandered around kind of aimlessly. In fact, our suitcases are still packed. Go figure.
I am very happy to be done, but also apprehensive about all that lies ahead. I think it would have been the most glorious day of my life if I knew for sure that we would never be back and we could just walk back into our old life. But in many ways, this is just the beginning of a journey on a whole new path. Steven has to learn how to walk and we all have to learn how to live with uncertainty.
But even with my hesitations, I can see how leaving the hospital is a really really good thing. Steven will feel so much better and that will help him make progress. Having our family together and back into some of our old routines is going to help us all, too. So it truly is a reason to celebrate!
(P.S. Speaking of celebrations, don't forget that everyone is invited to Wheeler Farm Monday night for a family night party. Dinner, games, and fun all provided. Come anytime between 5:30 and 7:30. We'd love to have anyone who wants to join us!)
On Friday night, my brother, Matt, came and had a sleep over and let Rob and I off the hook. They stayed up late playing board games and video games and eating pizza. My brother, Mike, showed up for the party, too. Steven was in heaven.
Saturday morning was a big day--DISCHARGE! First, the nurses all sang to him "Happy Last Chemo!"
Then it was time to ring the bell.
Steven rang it and truly it brought tears to our eyes. One of these days, if I can muster up the energy, I'll post the video of him ringing it.
Goodbye hospital! I know we will be back, but hopefully not for any more chemotherapy.
I have a lot on my mind as we finish this up. I got home yesterday and part of me wanted to crawl into bed and sleep until 2012. I feel like I have run an emotional marathon and now it is time to crash. On the other hand, part of me wanted to start cleaning out my drawers and cupboards and catching up on our budget. In the end, I did neither. I wandered around kind of aimlessly. In fact, our suitcases are still packed. Go figure.
I am very happy to be done, but also apprehensive about all that lies ahead. I think it would have been the most glorious day of my life if I knew for sure that we would never be back and we could just walk back into our old life. But in many ways, this is just the beginning of a journey on a whole new path. Steven has to learn how to walk and we all have to learn how to live with uncertainty.
But even with my hesitations, I can see how leaving the hospital is a really really good thing. Steven will feel so much better and that will help him make progress. Having our family together and back into some of our old routines is going to help us all, too. So it truly is a reason to celebrate!
(P.S. Speaking of celebrations, don't forget that everyone is invited to Wheeler Farm Monday night for a family night party. Dinner, games, and fun all provided. Come anytime between 5:30 and 7:30. We'd love to have anyone who wants to join us!)
Saturday, October 8, 2011
Home!
I'll post more later, but thought I'd give an update: Steven cleared his methotrexate this morning and we came home around lunchtime. Yipee!
Friday, October 7, 2011
Top 10 lists
Top 10 things I will not miss about the hospital:
10. The cafeteria smells, especially in the morning
9. The parent shower
8. Super frequent packing and unpacking
7. Constant hand sanitizing
6. The parent "bed"
5. Fear of hospital germs
4. Nurse interrupted nights
3. Hearing babies cry down the hall or code blues on the PA system
2. Being apart from the rest of my family
1. Watching Steven feel miserable
Top 10 things I will miss about going to the hospital:
10. The beautiful views from the windows
9. Housekeeping!
8. Lots of time to think or read or waste time on the internet
7. Unlimited pebbled ice
6. Room service!
5. Pastry deliveries from my dad
4. Meeting and visiting with parents who are in similar situations
3. Spending time with Steven, a captive audience
2. The feeling we are actively killing cancer cells
1. The wonderful doctors, nurses and staff that have taken care of Steven so well
10. The cafeteria smells, especially in the morning
9. The parent shower
8. Super frequent packing and unpacking
7. Constant hand sanitizing
6. The parent "bed"
5. Fear of hospital germs
4. Nurse interrupted nights
3. Hearing babies cry down the hall or code blues on the PA system
2. Being apart from the rest of my family
1. Watching Steven feel miserable
Top 10 things I will miss about going to the hospital:
10. The beautiful views from the windows
9. Housekeeping!
8. Lots of time to think or read or waste time on the internet
7. Unlimited pebbled ice
6. Room service!
5. Pastry deliveries from my dad
4. Meeting and visiting with parents who are in similar situations
3. Spending time with Steven, a captive audience
2. The feeling we are actively killing cancer cells
1. The wonderful doctors, nurses and staff that have taken care of Steven so well
Thursday, October 6, 2011
For Steven's last round of chemo, the pump says it all for me:
By chance did you hear my big sigh of relief coming from the hospital last night?
So far, Steven's last round of chemo has gone smoothly. Although he felt nauseated, he didn't even throw up this time around, which is unusual for him. We are feeling so happy that this is it for him. He'll be at the hospital until his blood clears the chemo, which will hopefully happen sometime Saturday.
By chance did you hear my big sigh of relief coming from the hospital last night?
So far, Steven's last round of chemo has gone smoothly. Although he felt nauseated, he didn't even throw up this time around, which is unusual for him. We are feeling so happy that this is it for him. He'll be at the hospital until his blood clears the chemo, which will hopefully happen sometime Saturday.
Tuesday, October 4, 2011
One last time
At 4:00 this afternoon, I finally got Steven's lab results and confirmation that he is indeed going in tomorrow for round 18 of chemo--his very last round!
I spent the day motivating Steven to do homework and physical therapy, doing laundry and dishes, etc. I kept debating with myself about whether or not to pack. I have some sort of superstition that if I pack, he'll get delayed. So here it is, 10:30, and I still haven't packed. I started on my child care plans about an hour ago.
But just as I heard the great news, Andrew got home from school and it was pumpkin painting time. Someone left us a fun surprise on our doorstep last night including pumpkins for each of us and paint and although Laura wanted to paint them when she woke up, I made her wait until Drew came home from school. So instead of packing, we painted. And after that and dinner, we headed to the library.
I can hardly believe I am almost to the point where I can put the suitcases away and be done with the packing. We were talking about what the girls are doing this round during dinner and I mentioned sleeping over at grandma's. Steven thought that sounded like a lot of fun and Addie said, "When this is over, I don't want to have any more sleepovers without you, Mom."
Poor thing! We are all at our limits--physically and mentally. Being done will truly be a reason to celebrate.
Speaking of celebrations, we felt like the end of treatment was a pretty good reason to party and so our families are hosting one. Everyone's invited, bring your families--
I spent the day motivating Steven to do homework and physical therapy, doing laundry and dishes, etc. I kept debating with myself about whether or not to pack. I have some sort of superstition that if I pack, he'll get delayed. So here it is, 10:30, and I still haven't packed. I started on my child care plans about an hour ago.
But just as I heard the great news, Andrew got home from school and it was pumpkin painting time. Someone left us a fun surprise on our doorstep last night including pumpkins for each of us and paint and although Laura wanted to paint them when she woke up, I made her wait until Drew came home from school. So instead of packing, we painted. And after that and dinner, we headed to the library.
I can hardly believe I am almost to the point where I can put the suitcases away and be done with the packing. We were talking about what the girls are doing this round during dinner and I mentioned sleeping over at grandma's. Steven thought that sounded like a lot of fun and Addie said, "When this is over, I don't want to have any more sleepovers without you, Mom."
Poor thing! We are all at our limits--physically and mentally. Being done will truly be a reason to celebrate.
Speaking of celebrations, we felt like the end of treatment was a pretty good reason to party and so our families are hosting one. Everyone's invited, bring your families--
Sunday, October 2, 2011
A cancer documentary
Some nights as I fall asleep, I think of all the blog posts that I haven't mustered the energy to write. I tell myself, one of these weeks, I'm going to do a marathon and catch up with all the things I need to write down, mostly for my own memories.
Here is a post I've been meaning to put up for a while now. Some of you may know that my family puts on a film festival every year around Labor day. Lots of the videos are funny, but our entry this year was not very humorous. We just had to do a cancer video--afterall, cancer is defining us these days. We decided to have the kids narrate a documentary of our year. We had over two hours of footage that we edited down to this. (And when I say we, I mean Rob.) It didn't turn out exactly as I had envisioned it--but here it is.
Here is a post I've been meaning to put up for a while now. Some of you may know that my family puts on a film festival every year around Labor day. Lots of the videos are funny, but our entry this year was not very humorous. We just had to do a cancer video--afterall, cancer is defining us these days. We decided to have the kids narrate a documentary of our year. We had over two hours of footage that we edited down to this. (And when I say we, I mean Rob.) It didn't turn out exactly as I had envisioned it--but here it is.
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