Good news! Steven's scans were good today. Last night as I was saying goodnight to him, I asked if he was nervous and he said, "Not at all. Mom, they are going to be good. Don't worry." He was right, thank heavens! If attitude has any sway on cancer, then he has this thing beat. (Don't take that wrong--I'm all for chemo, trust me! It reminds me of a deep thought by Jack Handy "Dad thought laughter was the best medicine. Maybe that's why several of us died of tuberculosis.")
Slightly dissappointing to us was that he has to go back in December. Not because they are worried, it's just that he needs all his yearly appointments, like an echocardiogram. Plus, even though we are only weeks away from his two year anniversary of finishing chemo, it was November when they did his post chemo scans. And he forgort to drink anything this morning which threw off one of his tests.
So I guess we'll be doing this again sooner than I had hoped, but that is okay. We'll be extra sure before we take a six month break that he has no more cancer.
For today, I will just take a deep breath and thank God for giving us even more time with this darling boy.
Tuesday, September 24, 2013
Monday, September 23, 2013
Summer has come and gone and it was lovely. The kids are just at the perfect age to be excited about all my adventurous plans. And they were perfectly happy to hang around at home when I wanted to do that instead. I was kind of sad to send them off to school this year. I cried for hours the morning I sent Laura to kindergarten. It's kind of lonely here in the mornings. But I have plenty to keep me busy for now. I'm not sure what it is happening to me. I used to be on top of my life but as the last few years have presented some serious challenges, I feel like things are starting to break down big time.
But today might be the worst day of all to assess my mental health. Tomorrow Steven has scans. I am hoping that everything is great, but he has had a cough and lately every single time he coughs, I feel like I did that first time they told me he had cancer. That fear only lasts for an instant and then I reassure myself with statistics and other evidences of health. I want so badly for everything to be okay that even the thought of finding anything on the scans is devastating.
Luckily, he isn't worried. He doesn't seem to notice he is coughing or if he does, has not associated it with cancer. He is as happy as ever--he even knows about the scans, but doesn't seem worried. I must be doing a pretty good job of hiding my anxiety from him. He has seen it before and has called me out on it too! He will be worried going to the hospital tomorrow, but he has been spared the weeks of agony that I've endured.
Steven is doing so well. He started playing soccer with a regular recreation league. His team is really good to him and he loves it. He watched his siblings play last spring and he was determined to be a part of soccer himself. He has a long way to go, but he puts his whole heart into every game and it is fun to watch. I was telling his story to some of the parents on the team and they were blown away. Nobody guessed that his foot was on backwards! Or that he had only been walking on a prosthetic for 18 months or so. He can run a little and walk forever. It doesn't hurt him at all--if anything, just his muscles ache after hard exertion.
We had a fun opportunity at the end of the summer. My sister and her in-laws invited us to a family cabin in California by a lake. It was a magical week--perfect weather, bright stars, good food and excellent company. The boys were absolutely in heaven with water, dirt, fishing, kayaking, and card games. My kids had already adopted their cousin's grandma, but "Grandma Vicky's" fishing tutoring (and let's be honest, she did all the hard parts of fishing) have cemeted their love for her. The whole thing was absolutely beautiful.
Here is a video from the week. Our family does a film festival every year and this year one of the themes was reality TV. We made our own reality TV short and based it on an idea Grandma Vicky had to award the kids "Man Beads" for all of their accomplishments at the cabin. The boys spent a couple of hours working out all the achievments and had quite the list going. This is only a short part of the fun, but hopefully you'll get the picture.
But today might be the worst day of all to assess my mental health. Tomorrow Steven has scans. I am hoping that everything is great, but he has had a cough and lately every single time he coughs, I feel like I did that first time they told me he had cancer. That fear only lasts for an instant and then I reassure myself with statistics and other evidences of health. I want so badly for everything to be okay that even the thought of finding anything on the scans is devastating.
Luckily, he isn't worried. He doesn't seem to notice he is coughing or if he does, has not associated it with cancer. He is as happy as ever--he even knows about the scans, but doesn't seem worried. I must be doing a pretty good job of hiding my anxiety from him. He has seen it before and has called me out on it too! He will be worried going to the hospital tomorrow, but he has been spared the weeks of agony that I've endured.
Steven is doing so well. He started playing soccer with a regular recreation league. His team is really good to him and he loves it. He watched his siblings play last spring and he was determined to be a part of soccer himself. He has a long way to go, but he puts his whole heart into every game and it is fun to watch. I was telling his story to some of the parents on the team and they were blown away. Nobody guessed that his foot was on backwards! Or that he had only been walking on a prosthetic for 18 months or so. He can run a little and walk forever. It doesn't hurt him at all--if anything, just his muscles ache after hard exertion.
We had a fun opportunity at the end of the summer. My sister and her in-laws invited us to a family cabin in California by a lake. It was a magical week--perfect weather, bright stars, good food and excellent company. The boys were absolutely in heaven with water, dirt, fishing, kayaking, and card games. My kids had already adopted their cousin's grandma, but "Grandma Vicky's" fishing tutoring (and let's be honest, she did all the hard parts of fishing) have cemeted their love for her. The whole thing was absolutely beautiful.
Here is a video from the week. Our family does a film festival every year and this year one of the themes was reality TV. We made our own reality TV short and based it on an idea Grandma Vicky had to award the kids "Man Beads" for all of their accomplishments at the cabin. The boys spent a couple of hours working out all the achievments and had quite the list going. This is only a short part of the fun, but hopefully you'll get the picture.
Sunday, August 4, 2013
Summertime
Summer has been a whirlwind of activity around here--I don't get to laze around much, but when I do it turns out that I don't blog.
I can't believe that summer is almost over for us. We have a few precious weeks left and we will use one of them for a camping trip. We have almost accomplished all the things on the summer bucket list but the one thing we haven't done enough of is nothing at all. We just haven't had time to be bored.
I did something I never thought I would--I sent the boys to a week long summer camp. It's called Camp Hobe and it is for cancer kids and their siblings. I just felt really good about sending them and it turned out well--they had an absolute blast. Steven even wrote me a letter from camp....something along the lines of "you were right about the pranking, Mom. We are in prank war with cabin 10. The food is awesome." Steven was the only amputee there but his counselors said that nothing slowed him down.
We've been busy with scout camps and cousins and water fights and dog walks and crafts and piano lessons and play dates and parks. It's been a great summer. Steven's prosthetic has the wear and tear and dirt to prove it. It will be kind of hard to send them all to school in the fall.
It is quiet days like Sundays when I am still that I get sad about Daniel. The other days are so full, I come to the end of the day and find myself totally spent. But Sundays are different and I wouldn't have them otherwise. I like to think about things and try to make sense of them and remember. The pain is less sharp and less often and sometimes feels a little like longing. I keep trying to envision myself sending the kids off to school and me being here alone. It's a difficult exercise--maybe because I didn't intend for it to happen this way or maybe because it feels too lonely. But it is coming right up and so ready or not, it will be me and the dog here in the mornings.
But for now I am trying to just take each day one at a time--school will be here before we know it, but hopefully that will just make the next few days even more precious.
I can't believe that summer is almost over for us. We have a few precious weeks left and we will use one of them for a camping trip. We have almost accomplished all the things on the summer bucket list but the one thing we haven't done enough of is nothing at all. We just haven't had time to be bored.
I did something I never thought I would--I sent the boys to a week long summer camp. It's called Camp Hobe and it is for cancer kids and their siblings. I just felt really good about sending them and it turned out well--they had an absolute blast. Steven even wrote me a letter from camp....something along the lines of "you were right about the pranking, Mom. We are in prank war with cabin 10. The food is awesome." Steven was the only amputee there but his counselors said that nothing slowed him down.
We've been busy with scout camps and cousins and water fights and dog walks and crafts and piano lessons and play dates and parks. It's been a great summer. Steven's prosthetic has the wear and tear and dirt to prove it. It will be kind of hard to send them all to school in the fall.
It is quiet days like Sundays when I am still that I get sad about Daniel. The other days are so full, I come to the end of the day and find myself totally spent. But Sundays are different and I wouldn't have them otherwise. I like to think about things and try to make sense of them and remember. The pain is less sharp and less often and sometimes feels a little like longing. I keep trying to envision myself sending the kids off to school and me being here alone. It's a difficult exercise--maybe because I didn't intend for it to happen this way or maybe because it feels too lonely. But it is coming right up and so ready or not, it will be me and the dog here in the mornings.
But for now I am trying to just take each day one at a time--school will be here before we know it, but hopefully that will just make the next few days even more precious.
Saturday, June 8, 2013
Still cancer free
Steven's scans yesterday came back all clear. Hooray! It has been a rather stressful week for me. I had worked myself into some serious worry and while I could also find peace at times, I was so crazy that every little thing would send me over the edge again. For instance, Steven hurt his good ankle one day--I got scared it was cancer. He was limping around all week and if you've followed our story, you know that we found the cancer because he was limping. He started limping with his hurt ankle, but then once that was better, he was limping because he had developed a blister with his prosthetic. And then a few times in the week, I heard him give a minor little cough. And so it went that by the time Friday came around, I was a mess.
I tried all sorts of things to get over my craziness. I tried to be extremely busy (but not at my own house). That helped a little. I quoted myself statistics and tried to stay positive. I tried some relaxation techniques. At one point I was doing some deep breathing and I had this flashback to my freshman year of college when I took a stress management class. I almost got an "A- in the class until I begged my teacher to reconsider and give me an "A." The memory made me feel guilty that I probably didn't serve the "A" afterall, since I was the most stressed out person I knew.
What finally helped me was prayer, fasting, going to the temple and listing to hymns. I know that prayer has a power. I don't know how much prayer will change the outcome--I feel like our days numbered and that even people of faith die of cancer. But I was blessed with comfort that whatever happens, we will be able to handle it with God's help.
So by the time the scans came around, my extreme craziness had subsided. The morning of scans, Steven pet the dog for over an hour. For all her trouble, I noticed this week how everytime I pet her, my anxiety would almost immediately dissapear. These are the moments I have to remember when I want to ship her off the humane society!
But anyway, as I said, the outcome was good this time around and now I can breath easy for a while longer and enjoy this summer without worrying about relapse (much). Steven will have scans again in September and those will be his two year scans. If everything looks, good, he will not have scans again for six months after that. Two years is a major milestone for survival statistics, so it will be a big deal.
I took him out for a hamburger after his scans--it has become a tradition. He said "Mom, when I do my final scans in 8 years from now, let's invite everyone we know to the restaurant for a hamburger party." So, September of 2021--save the date folks!
I tried all sorts of things to get over my craziness. I tried to be extremely busy (but not at my own house). That helped a little. I quoted myself statistics and tried to stay positive. I tried some relaxation techniques. At one point I was doing some deep breathing and I had this flashback to my freshman year of college when I took a stress management class. I almost got an "A- in the class until I begged my teacher to reconsider and give me an "A." The memory made me feel guilty that I probably didn't serve the "A" afterall, since I was the most stressed out person I knew.
What finally helped me was prayer, fasting, going to the temple and listing to hymns. I know that prayer has a power. I don't know how much prayer will change the outcome--I feel like our days numbered and that even people of faith die of cancer. But I was blessed with comfort that whatever happens, we will be able to handle it with God's help.
So by the time the scans came around, my extreme craziness had subsided. The morning of scans, Steven pet the dog for over an hour. For all her trouble, I noticed this week how everytime I pet her, my anxiety would almost immediately dissapear. These are the moments I have to remember when I want to ship her off the humane society!
But anyway, as I said, the outcome was good this time around and now I can breath easy for a while longer and enjoy this summer without worrying about relapse (much). Steven will have scans again in September and those will be his two year scans. If everything looks, good, he will not have scans again for six months after that. Two years is a major milestone for survival statistics, so it will be a big deal.
I took him out for a hamburger after his scans--it has become a tradition. He said "Mom, when I do my final scans in 8 years from now, let's invite everyone we know to the restaurant for a hamburger party." So, September of 2021--save the date folks!
Sunday, May 19, 2013
Running with Angels
On Saturday, I made my 5K debut along with my sister, Anne, sister-in-law, Amy, my mom and Steven. This race is called "Running with Angels" and honors lost babies and supports families who will someday face this trial. It was such a great event--I really was just touched by all the love for the little ones who have made such a big impression on our lives.
We took one picture (the bottom one) before the race, when everything was dry, but almost as soon as we started the run, the rain came pouring down. We were thoroughly drenched by the end. My mom walked with Steven and I kept thinking how sorry I felt for him--that he was cold and wet and couldn't run fast. But he came cheerfully to the finish line (top left) and said as we were driving away, "It is a good thing I have a prosthetic leg because I only have one leg that is cold!" Ever the optimist!
It was fun to remember my angel baby, Daniel, but I couldn't help but feel that my dear family running with me and cheering us on have been my angels, too, to get me through these rough months and years. They represent only a small part of my angelic family and friends who have truly carried us when we couldn't go on. Where would I be without you all?
Sunday, May 5, 2013
Six months
On Friday, it was six months since we lost our baby, Daniel. I long for words to express how I feel and what I've learned and how far I have to go, but I don't have them. I haven't shared pictures of Daniel on this blog; I've kept them on my private blogs. None of the pictures we have capture him how I remember him or how I want to remember him, but today I just felt like sharing an image or two of my angel baby.
Grief is an interesting thing....I don't know that I really understand it. It was so all-consuming at first and really, it sort of still is. In a different way, though. At first the tears would not stop. As the months have passed, I've had to leave the comfort of my home and go out into real life and take care of my other kids. I have had to explain to people who saw me pregnant but didn't know the circumstances where my baby is. I see babies all the time--mostly they make me smile but sometimes I wish I had mine here too. I really want to order a headstone for Daniel's grave, but words escape me. It is such a small area in which to squeeze a heart full of sentiments.
So many people ask me how I am doing. I don't know how to answer. In some ways I am doing fine. Thanks to my puppy and my kids, I get out of bed every morning, get going and do most of the important things. When I seek it, I can find a great deal of comfort from my Savior. Sometimes I feel too worn out to pray as deeply as I should. After what I've been through, I am now a different person, I see things differently. I am praying that these experiences will make me a better person--but I'm afraid I am very much a work in progress. The grief has slowed me down considerably and my house is full of unfinished projects. I feel like I have a better idea of how to help people who are suffering. The only problem is that I am either too self focused or too depressed to reach out much. I am hoping for better days and as I wait, I do what I can to fix some my problems.
So that is my little update for now. I was kind of hoping I had something insightful to say, but I guess I don't really. I love my little family and while I know Daniel is still part of it, I wish he were here.
Wednesday, April 17, 2013
Steven had his moment in the spotlight today--maybe more than he wanted! He won an essay contest that he entered along with his class and was one of four first place winners in the United States. He won a laptop and a visit from Sharon Robinson, the daughter of Jackie Robinson. His teacher also won a laptop and autographed copies of one of her books. If you get a chance to watch the news, he will likely be featured tonight. We were a little stunned by the cameras in our faces and attention, so if we sound a little dense, don't judge!
Sharon was just an amazing woman and it was such an honor to meet her and have her share a little bit of history with us. Her father was an amazing man and she has carried on his legacy so well. The essay contest was to share how you had overcome a barrier using some of the values that Jackie Robinson lived by. Steven wrote about cancer (big surprise!) and told about how he needed courage and family to get through it.
I saw his essay for the first time today and while I wish I could have helped him edit it, he did a great job. I think the way he lives every day is even more of a testimony to the values he lives by--he's a great kid! We are excited for him.
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