Friday, December 27, 2013
He was right again, thank heavens! The ECHO was good and so was the blood work as well as the scans. We felt so grateful and happy. I wanted to shout it out to the world on social media, but something held me back. The same week as Steven's scans, one bone cancer (Ewings sarcoma) boy got news of relapse and another Ewings patient was waiting on a lung biopsy result, which luckily turned out to not be cancer. And with all that, a month or so ago, a little osteosarcoma patient who also had a rotationplasty, died of heart failure from her chemo. And so I took our good news with a dose of reality. I am so grateful for every day we have with Steven. I hope with every ounce of my soul that it will be a lifetime of days. But even good scans this time is no guarantee that he will live relapse free forever. I wish I could just live like him--smothered in hope with no room for fear.
I try to have that kind of hope and I think it will be easier to go forward now that we have a six month break until his next scans. For the next three years, he will get scans every six months. When we hit the five year mark, he will go annually until he hits the 10 year mark. We have a lot to look forward to in those months and years--we really are so blessed.
Thursday, November 14, 2013
At the school, the sixth graders and several of the teachers and staff shaved their heads or donated hair to Locks of Love yesterday to show solidarity to this boy. Steven wanted to be first in line--I think he really wants to do something to help him, and I haven't been the best at finding him an opportunity to follow through with that desire. I was so grateful that the teachers and kids at school planned this support day at school. Steven loved it!
Addie has been growing her hair out for some time now. This week she decided it was finally time for her to cut her hair and donate it to Locks of Love. Once she decided to do it, she didn't hesitate. On the way home, I said, "There are going to be a lot of people who are sad you cut your hair."
She said, "Well someone who doesn't have hair will be very happy I cut it."
|14 inches to Locks of Love|
|Steven and Addie|
|Andrew finally succeeds in his photobombing efforts|
Sunday, November 10, 2013
|The kids--all grown up and off to Hogwarts|
|The boy who lived|
|A rare shot of Molly holding still|
|Pumpkin picking--a hard choice|
|Hatching a monarch--an exciting development.|
|Steven played soccer this fall and loved it! He tried his hardest and got lucky with his team. They were undefeated this fall.|
Sunday, November 3, 2013
I was thinking about what I wanted to write on my blog for his birthday, and I have decided to share a few things I've learned or experienced with grief. I am not an expert, but I know more now than I did a year ago. And maybe something I share can be helpful to someone else.
Those first few weeks and months I found the grief very intense. I would cry all the time and hold his blankets and stay in bed. I was recovering physically, so that didn't help either. I think my kids were really worried about me, they hadn't seen me so sad before. While I was very sad, there was also a very real sense of peace in my heart. I know that Christ's promise that "blessed are they who mourn, they shall be comforted" is very true. Not only did I feel His presence and love very strongly, the people around me acted as his hands and fed, loved and cared for me and my family. I am amazed at how helpful all the kind notes, gifts, and words of encouragement were to me. When someone is grieving, it is best to act, even if it is something seemingly insignificant, all of it is meaningful. "I'm sorry for your loss" works well, if you don't know what to say. Just acknowledging the loss is helpful, I know I felt more comfortable around people that I knew had already heard what had happened.
As the months went by, I started feeling better and getting back into life more. The puppy was a big help in some ways, and a total nightmare in others! But she gets me out of bed every morning and makes me take a walk which is a huge help. But getting back into my old lifestyle was very hard. I have had to work to keep up with the basics of caring for my family, where before I could do that and extras. I got very frustrated with myself and felt very overwhelmed. My grief counselor told me that sometimes it is in the 3-8 months after the loss that things are the hardest. I certainly found that to be true for me. I felt very alone and that life was marching forward without me. Part of me wanted to stay behind and grieve, while part of me was ready to move on.
A few months ago, I started to feel really pretty good--almost back to my old energy levels at times. But then at times, the sadness sweeps in and I feel overwhelmed again. And I get behind and start a cycle of feeling overwhelmed. I have to work extra hard in the times that I feel good to even stay above water.
I learned that it is very important to take some time out and mourn my loss. I learned that grief and mourning are different and that mourning is essential in healing from the grief. It is something I haven't done as well as I should. I have also learned through cancer and this stillbirth experience, that life is so short. So I have a tendency to want to do fun things with my family and over commit myself and just get the very most out of life. But that wears me out more than it used to, and so many simple things have suffered.
Today the sadness hit me harder than I expected it to. We woke up to a snowstorm--great big flakes of white snow. It felt like a little sign somehow that God hadn't forgotten either, and that somehow it will all work out.
Tuesday, September 24, 2013
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.
Monday, September 23, 2013
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
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
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
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
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
Thursday, March 28, 2013
The leg is made of carbon fiber. Eric, the man who made his prosthetic, took us around his shop and showed us how it was done. It is so cool--maybe I ought to do a whole post on it. Steven had requested a thermometer in his leg and so Eric made a mold of this little keychain. He had of course, made a mold of Steven's leg as well. He put the carbon fiber over the foot mold and then he took the thermometer mold and adhered it to the leg in the place where he wanted it. Then he puts resin over the carbon fiber. He cut out the thermometer mold (had he used the actual thing, it would have melted). Then he glued the actual thermometer in place. Now, that is how I understood it, though I may be wrong--I am no expert here.
So yes, Steven also has a compass--and he just keeps brainstorming the gadget possibilities on future legs.
This leg seems to be a whole lot more straight than his old one. Straight as in, his backwards foot isn't out to the one side like his other leg. It has changed the way he walks, but I am hoping that with practice he will just keep getting stronger in the places where he is weak.
Sunday, March 24, 2013
And then we have my cute doggie who loves the dirt and mud as much as my kids do (is it possible?) We have a giant garden area in the middle of our backyard and the kids (and all their friends) think that the dirt is the best thing about our new house. As soon as they start to dig, so does the dog. Oh, and speaking of digging, there is a gopher going to town in my backyard as well. Most of the tunnels you see are thanks to the kids though!
So things are good. I've been stressed, but mostly just a heap of little decisions and things that aren't that critical. I sometimes wonder if it isn't still the grief or maybe some depression that rears up it's head in unexpected ways. I have a way to go with my mental and emotional health--really. I think I was doing better when Steven was undergoing treatment than I am now. But I haven't lost hope and I get up and going everyday--even when it is hard. Its harder to keep up with my laundry and dishes, but there are (usually) dishes to eat on and clothes to wear.
Every day, spring inches a little closer and I feel this overwhelming sense of hope with each new green plant that makes its way out of the ground. I have been so touched by the hope of the resurrection and eternal life. It means more to me than ever now. I love the longer days and I truly move forward every day because I know the next day will be a little brighter. Bring on the spring!
Tuesday, March 12, 2013
Friday, March 8, 2013
First of all, Steven had scans today and they looked good. All his appointments were quite early and very back to back and so the doctors could see the chest CT scans but no radiologist had submitted a report by the time we left. The doctors couldn't see anything troubling, so I guess that means there is no obvious cancer anyway and that is good enough for us.
We were all very happy upon leaving the hospital--it kind of feels like someone just promised you three months to live and that is kind of cool. I know it isn't that way. There are no guarantees and most likely he will have a whole life to live, but for some reason, good scans feel like a gift.
And all that happiness dispelled all the fear and gloom surrounding our latest drama--Laura broke her leg last night. She was jumping on the trampoline and nothing very dramatic happened--probably someone took her bounce--and then she was down and in pain. We had quite the night last night at the instacare and ER. In a weird cooincidence, her break is in the exact same place as Steven's tumor. I was already an anxious mess with scans the next morning, but this kind of put me over the top. I wonder what the doctors thought of me. I wasn't freaking out, I was just dull and unfocused. This was her second trip to the instacare this week--earlier she cut her chin and got stitches. Between that and her bruised up legs, she looked pretty beat up. I will say that she has had a glorius week playing outdoors as much as she can--lots of mud pies and sidewalk chalk and bikes and scooter and trampoline time. Hopefully it will sustain her through the next few weeks! The break is rather minor but she is still in a lot of pain. She'll get a cast on Wednesday, but I'm not sure how long she'll have one. She is really frustrated with the itchiness of the brace.
So there is that. Steven's been so happy and doing so well. I can't remember when I wrote last, but he still doesn't have a new prosthetic. He had one for a while and it didn't work and so they started over. It should be done in the next week or two. His old one has been repaired and is working well in the meantime.
And as far as Laura goes, I don't know the details on how mobile she will be, but I do have some pretty good connections to get her whatever mobilitly equipment she can use ("not crutches" say the doctors, citing her stitches and bruises). So when the pain subsides, I'm sure we'll figure this out. In some ways it doesn't feel like a big deal because we've dealt with worse, but in other ways it just boggles the mind that more misfortune can befall us.
But honestly, as I left the hospital today, I didn't see it as a misfortune at all....I am just glad to have all my kids (and my sister) alive and well. I'm feeling pretty lucky.
Sunday, February 17, 2013
We've had some super busy weeks just doing normal things mixed in with the fun and the not so fun extras. For one, Steven got his new leg over a week ago. The bad part is that he hasn't been able to tolerate it very well. We keep going into Shriners to get it adjusted and leave with hopes that it is fixed, but then hours later he is limping again. We spent all afternoon at Shriners on Friday and finally his new prosthetist suggested we just start over and cast him for a new leg. Steven was sick and tired of being there and so he said, "No, let me try it over the weekend, maybe I just need to get used to it." So I guess we are getting the first available appointment next week and starting again. Oh well, his old one works just fine now. He had totally snapped a metal part but the great guys at Shriners fixed it, so at least he isn't hopping around on one foot anymore.
Something fun this week--Steven got an award from the local city for Student of the Month. We were invited to a luncheon and the principal told everyone what an inspiring kid Steven is and she was right. Afterward I was congratulating him and he said, "Yeah, but the only reason I got it was because I got cancer." Ouch. The thing is, in a way he may be right. But my argument is that his experiences with cancer have transformed him from great to awesome. (And frankly, to borrow one of his favorite words, he's on his way to 'epic'!)
We are all loving Molly (our puppy) more and more all the time. She has just been so good for all of us. In the midst of all the chaos that is our life, we can come home to her. She seems to be learning to be better behaved and isn't too destructive. She is funny and darling and continues to get me out of bed and get me going, even early in the morning. And that is kind of important to keep up with this family, so thank you, Molly!
Sunday, February 3, 2013
She is trying to catch a snowflake on her way to lay a flower down on Daniel's casket. It looks like hope and beauty and optimism, all the things I am seeking as I try to find some meaning in his death. I've come a long way in three months, but I still miss my little baby.
Friday, February 1, 2013
Sunday, January 20, 2013
In the last few weeks, I have had that thought cross my mind on many occasions--when the kids are laughing or when I am holding sleepy, soft, cuddly little Molly. Our world is kind of revolving around her right now--Steven took 100 pictures or so of her the other day. Of course, only one or two was in focus. She doesn't slow down very often.
In all fairness, more often than the happiness quote, I've wondered if I have gone crazy to bring home a puppy. She is as much trouble as she is fun! Time will tell if I'm crazy or used my money wisely in this endeavor.
So many things happening these days--this post could get long and boring. Steven had his birthday--lots of celebrating. Cancer survivors can really appreciate birthdays, and we are no exception. He continues to inspire me. The other night as he was getting ready for bed he said, "Tomorrow is going to be so much fun!" I couldn't remember any special plans and so I asked him what was going on. He said, "I don't know, but that is what makes it so fun!" He is pretty much always happy and cheerful.
Again this year, he won the school Geography Bee. His friends lifted him up and wanted to carry him out of the gym like a true victor. He is so lucky to have such a supportive group of friends.
I never did post this, but a few months ago he got hearing aids. The chemo damaged his hearing and it was getting to the point where I could tell that the loss was affecting his speech and comprehension. It took some time to go to all the necessary appointments and for him to get accustomed to the hearing aides. But now that he's had them for a while, he really likes them. They haven't fixed everything, but they have a helped a lot.
Also in health news, we have started the process to have a new prosthetic built for him. He should have that sometime in the next month. The prosthetist that made his two other legs has left Shriners, so we have a new set of eyes looking a Steven's leg and hopefully it will have some improvements.
I think about Daniel all the time. Life has moved forward in a way that sometimes make me wonder if it was all a dream. That sounds funny, I guess, but I just don't understand how things can keep moving forward after something that sad has happened. I mean, how do I get out of bed? I don't get it. The sadness is still there and sometimes it creeps up and chokes me just as intensley as ever. But mostly I am doing what I used to do and often even happily. I believe Christ's promise to all who mourn, that we will be comforted.
We got plastered with snow last week--it was between two and three feet and beautiful. The kids and dog are huge fans. The boys discovered a sledding hill not far from our house and like to go whenever their snow clothes are dry and the sun is up. Come to think of it, the sun isn't a requirement--they think night sledding is pretty amazing too.
Lots of people I love born this month, including my sister, Alisa. She got to celebrate her birthday last week--one we didn't know if she would see. I love that she is beating cancer! And not just physically, she is beating it mentally and that is what amazes me. (My definition of beating cancer mentally is by getting up every morning and going on with life. She does even more than that, though--she does it happily and serves others every day. She spent this birthday getting radiation and then taking treats around to all her nurses so they could celebrate her survival with them. What!?)
So there is a small January update. Starting out the year on a good note--let's keep it that way!
Sunday, January 6, 2013
When 2012 started, I had a feeling in my bones it would be eventful. I get everyone's Christmas letters and most years I think "I'm off the hook--nothing much has changed around here." Last year I envisioned how I would send out a Christmas card announcing a new house and a new baby a trip to Hawaii and Steven cancer free and walking. Some of my dreams came true. But when December came, I found I couldn't write anything Christmas cardy at all--to tell bad news hardly seemed festive. My family pictures all seem incomplete and so I passed this year.
Not all surprises were bad. To be honest, at one point I didn't think my sister, Alisa, would still be around. I'm so glad that I was wrong. She shows me everyday how to hope.
As I start a new year, I am trying so hard not to have too many expectations but at the same time be full of hope.
I did find a dog....I've searched hundreds of ads and hers was the first that really grabbed me. She isn't exactly what I was looking for, but it still feels right. Of course, she hasn't been here long, I hope my intution was right. For now we call her Molly, but don't get anything engraved yet...I have a tendency to change names. Her parents are a mini labradoodle and an Aussiedoodle, but she seems to be mostly Australian shepherd. I was hoping for a nonshedding dog, but I'm pretty sure she sheds. We are kind of in love with her already, though, so we may have to overlook that part.
My picture doesn't really do her justice, but isn't she cute? Doesn't that look just inspire hope for a great year?