Exultant

Last night, Steven and some of his classmates were in a state level competition called Creative Pursuit. They won for their division and Steven was sooooooo excited. On the drive home, he exclaimed, "I am feeling so exultant!"



Then he said, "This is the best day I've had in a long time!"

I was curious--just how happy was this day compared to all the other great days he has had lately? I asked him, "When was the last time you had a day this good?"

He thought about it for a minute and said, "I guess it was Thanksgiving. Oh wait, maybe it was the Messiah sing-in." Since it hasn't even been a week since Thanksgiving and the sing-in happened on Saturday, I guess it hadn't been so long afterall.



If you are around Steven much these days, you will find that he often has red letter days. I don't know if I have just forgotten how he used to be after not feeling well for nine months, or if the cancer experience has changed him. Either way, he seems to enjoy life more than ever. Now, don't get me wrong--he isn't perfect. He has sad and very frustrating moments, too. And even those seem to be lower than before. We all seem to be more sensitive to the joy and sorrow around us.

He has had some other amazing days that haven't made it on the blog lately. For one, he got a package from Make-a-Wish with a key to the wishing place. We aren't sure when he will get to declare his wish, but he is so happy and excited about that.

Another golden day was when a LEGO rep who had heard about Steven brought over a giant Star Wars ship--bigger than any set we have ever owned by far. Talk about a dream come true for him. She also gave him a hefty gift card to Toys-r-Us, and so he got to live his shopping spree dream.



Every day, he wakes up just thrilled to go to school. Excited for recess or chess club, or math quest--just whatever! Now, just think about how excited your kids are for Christmas and add that into the mix right now. We have lots of fun things planned for this season and he is looking forward to it all.

So for all of you who wonder how he is doing--he's is happy and he feels great. He is back, and though still not able to do all the things he used to do, he is "exalutant" about the things he can do.

That he had a place set for him made me super grateful.



And even more so that he was there to enjoy it.

Thankful

I swear I really have meant to post in detail many of things I am thankful for. My week has been crazy, though. I kind of expected life to slow down once treatment was over, and in many ways it has. But I no longer am forced to take off days at a time, with little to do but read and write.

I just put up a post I wrote on Sunday, but have been meaning to edit. Based on how things are going, the editing seems ulikely, so there you have it. I have so many more things to be grateful for, and I wanted to list a few things here. Each one deserves its very own post, but I may never get around to them. So here we go!

I am thankful for my life. I love this world and all that I can see and do.

I am thankful that Steven has survived this year. I appreciate all of my kids more because I am seeing first hand how precious they are and how precarious life can be.

I am thankful for the doctors, nurses, therapists, techs--everyone who has been involved in Steven's care. Everyone has been so capable and caring. I am thankful for Steven's pediatrician who found the cancer at once and for a hospital that could get his diagnosis and treatment started immediately.

I am so grateful for Shriners hospital. I need to do a whole post about this, but what an amazing organization that is dedicated to helping kids walk. I can't even tell you what a blessing it is to have a Shriners here in Salt Lake and to be able to work with them regularly to get Steven better.

I am grateful for my little house. There have been times when I am tempted to feel sorry for myself as we squish together in our little rental home, but this house is a huge part of why we survived this last year financially and I am glad we are here.

I am grateful for Rob who helps with dishes and kids on top of all his other responsibilities. He is very patient with me--with his level headedness, I know my emotional breakdowns can be pretty alarming. But he has been so patient with me.

I am grateful for all the people who have helped us through this year. So many people have very generously and thoughtfully helped us when we needed it most. I can't even tell you how much your help, encouragement and prayers have meant to us.

I could keep going, but it's time to work on the rolls and get the feast started! What a beautiful, sunny, perfect day. I really think this is my favorite holiday of all. Happy thanksgiving!

No one fights alone

My week got crazy, and I haven't been posting like I planned. Luckily, my gratitude hasn't been as short as my time. For the most part, I have been feeling very grateful, like for the beautiful leaves I get to rake up, and for wonderful friends. I can't deny I have moments like last night when the walls seemed to be closing in on me and I let self-pity in. Ugly.

But....in an effort to redeem myself from all that, here are some thoughts. I have been wanting to share a story that happened to us about the same time Steven had his surgery in May. I should have shared it long ago, but I had sort of decided when I started the blog that I wouldn't single out any of the many generous and kind things people had done for us or given us. I didn't want to miss anyone, or trivialize the little things by mentioning only the big ones. Every single thing--even just kind words--have meant the world to us. People do what they can, little or big, and we have appreciated it all.

Having said that, I am going to tell you about a fundraiser that a friend did for us, which kind of blew me away.

The background is that we had been debating about doing a fundraiser, and had come to no real conclusions. We are so lucky that Rob's company offers good health insurance (for which I am super grateful!), and we were able to meet our deductible with no problem. All the same, cancer and everything that comes along with it is expensive, so we were considering the possibility.

One day, a friend from church called and told me she wanted to sell some cinammon rolls for Steven at a church-sponsored youth event that involved lots of young people from the area. She wanted to get the young women from church involved with the fundraiser, since I had been working with them before cancer struck. I agreed and gave her permission to post our blog on her facebook account.

I didn't think much about it until she called and told me they wanted to bring the money over. She said they had raised a lot of money, but "a lot" is kind of relative, so I was thinking a few hundred dollars maybe.

She and her family brought over a plastic box full of one dollar bills and told us about what had happened. She owns a cleaning business and cleans for the corporate office of Rhodes rolls. One morning she was listening to her scriptures on her iPod and she had a distinct impression that she needed to ask if they would donate cinammon rolls to sell in order to raise money for Steven. Rhodes agreed to donate some rolls and my friend told them she first needed to get permission for the fundraiser, but she would get back to them.

I don't exactly know how the next part went, but in a short few days, the fundraiser was cleared to be at the event by the four Stakes that were participating in it which by itself was a huge feat. She sent out emails that pretty much went viral, informing people about the fundraiser.

She went back to Rhodes to tell them it was a go. They asked her how many rolls she wanted and she said, "How about 800?" "Eight hundred?" Clearly, she had bigger plans then they did. However, they agreed. They also let her use their industrial kitchen to cook the rolls and their employees helped her bake them.

By Saturday morning, she arrived just on time to the early morning event with 800 cinnamon rolls and this plastic box with a hole cut in the top. They sold the cinnamon rolls for a dollar, and sold every one. But people paid more than that. In the end, they earned over twice that much money, most of it in one dollar bills. People were generous and many sent a message along via the girls that they were praying and cheering for Steven.

The feeling of support that came along with this fundraiser was overwhelming. Not only did I feel like all these people from our community and church were looking out for us, I felt like Heavenly Father knew us and our needs. In the end, we decided not to do a fundraiser of our own. We put the money from the rolls (along with other money people have given us) into an account for Steven's medical bills. I can't look at the account without feeling grateful for all the people who have helped us in any way this year.

And so, today I am grateful for all the people who have helped us through this. My cousin also did a fundraiser this year and made some wrist bands that read, "No one fights alone." I know we have not been alone through this.

Our former prophet, Spencer W. Kimball once said, "God does notice us, and he watches over us. But it is usually through another person that he meets our needs."

So today I am thankful for Heavenly Father. I am grateful for all the people around me who have served us and given to us very generously. I have been truly amazed at the kindness of others. I hope that I can someday be the answer to someone else's prayer.

I am grateful for. . . . (Yellowstone edition)

a sister who planned a Yellowstone trip for Steven to celebrate his chemo completion (and happens to be an amazing photographer),



cousins who could come along and turn a cold trip north into an adventure,



a sister who skipped classes to come along and help out and make the trip more fun,



breathtaking views,



kids who put up with their brother's geological obsessions (check out Steven with his book on gyesers),



a husband who put up with his wife's car trip clausterphobia,



Steven's excitement about each site we visited,



my brother and his wife who hosted us as we passed through (and took us to the college observatory),



that Laura can sleep anywhere and managed to hit a single blanket when she threw up in the car,



Vacations. As hard as they can be for the mom, looking back I don't regret one of them we've taken. Even my little kids, who complained a bit about the smells and the cold and the walking, already talk about how much fun they had on this trip.

And as for Steven, he's just plotting how he can get there again. We met a man from Boston who had come alone to see Yellowstone for the 23rd time. Steven decided that sounded like a good goal. Well, three down, only 20 to go!

Good and bad luck

So at night as I lie down next to my girls while they fall asleep, I ponder on all that has happened this year, trying to make sense of it. When I have a lucid thought, I think about how I'd like to share it on the blog. Sometimes I fall asleep in the middle of my these thoughts, and the best I can do is to get up, brush my teeth and crawl into bed. But I keep promising myself that I will write some of them down, despite my exhaustion at the end of the day.

I have so much I'd like to say, but taking the time to say it just right takes so much energy. And that is something I am short on lately. But I will try. With Thanksgiving coming up, and us coming out of crisis mode, many of my thoughts are turned to gratitude. If I can, I'd like to write more frequent posts in the next weeks about some of the things for which I am grateful.

Let's start out with cancer. No, I am not yet at the point where I am grateful for cancer. I have heard other people say this, but I'm not there yet. I've seen it wreak havoc on people and families and I've seen my sweet little boy suffer in so many different ways from it. I still feel like I'd like to rewind and go back to the way things were a year ago.

But having said that, this cancer thing has brought a lot of good along with the bad. My kids love a book called Zen Shorts. In it, there is a story of a man who has something happen to him and his neighbors say he is unlucky. Then the bad luck leads to some very good luck, and they tell him he is lucky. The story flip flops between events that lead to each other--good and bad. In the end, his son breaks his leg and then doesn't get drafted into the war. The moral is that good luck and bad luck are all mixed up together.



I think about that all the time. I picture the illustration of the son with his leg in a cast and with crutches. I can't help but think of Steven. I find myself saying how lucky he has been to avoid so many complications, but then I catch myself and say how unlucky he was to get cancer. This good luck/bad luck concept is hard to wrap my mind around. Our view is so limited. God wants us to return to Him, and the way there can be very difficult. For some people, it may even seem like there is no good luck mixed in with the bad.

We have certainly been through a rough spot this year, but we have also been richly blessed. God has not left us alone. He put us in a position to weather this storm. He put people in our lives who have pulled us along when we couldn't take another step. And He has been a constant source of comfort when we had no where else to turn.

So tonight, I feel grateful for a loving Heavenly Father and for his plan for each of us. I feel certain that when I meet Him, I will understand some of the injustices around me. This life is a short moment compared to eternity and I have great faith that He can and will right all wrongs.

Hair: one month

Today it is one month since Steven left the hospital for his last chemo. I can't believe it! I feel like we've lived another lifetime since that happened. Life has come at us very fast this month!

I've been wanting to track his hair growth. Here is a picture taken the day he left the hospital a month ago. His hair was growing back a little by then, because methotrexate doesn't necesarily cause hair loss.



But still, he is looking like a whole different kid now with some eyebrows and eyelashes! Every day, I look at him and do a double take--I seem to have forgotten what he looks like with hair. I love it!

By the numbers

We had the first snow accumulation of the season and my kids were in heaven. Steven and Andrew spent the morning bulding a fort and then Steven got to go sledding with some friends in the afternoon. He wants to go again at his first opportunity. I will post a few pictures when I get a chance. His snowpants didn't fit super well over his prosthetic, so his leg was exposed. He said, "Well, that is one good thing about being an amputee--at least my leg won't get cold."

Back to the subject at hand. I've been meaning to post some numbers that I figured out while I was sitting in the waiting room the other day. Some of these are estimates, but it should describe our cancer experience well for you numbers lovers:

The time between diagnosis and port removal was about 8 1/2 months. During that time, Steven had 20 inpatient hospitalizations. 18 of those were for chemo, 1 was for a fever, and 1 was after his rotationplasty surgery. He spent 76 days and 56 nights in the hospital. He has had 3 surgeries and has spent over 14 hours under anesthesia. He needed 4 blood transfusions and 0 platelet transfusions. His port has been accessed over 40 times. He has needed almost 50 shots. He has had over 15 different medications prescribed to him at some point in the process. Each chemo admit cost an average of $10,000. With the chemo, the surgeries, the prescriptions, the scans, the blood transfusions, the home health, physical therapy, and his prosthetic, my best estimate is that this experience cost around $300,000. I haven't seen all the bills, or even added them up, so that is a guess and I could be short. Thank heavens for health insurance!

So, those are some big numbers. It may seem overwhelming to you if you arent involved in the cancer world, but I look at those numbers and feel pretty lucky. He breezed through with minimal complications. And that is another post I may sometime write--how good and bad luck are all mixed up together.

But for now, let me conclude by saying that I wish I had a number for all the letters, cards, care packages, emails, phone calls, dinners, money, blog comments, toys, service and babysitting hours, prayers and thoughts that have been sent our way. I do know that it is impossible to quantify how much it has all meant to us. Unfortunately, the number of thank you notes I've written is much smaller than all of the kind and generous acts that have been performed for us. But still, I am so grateful for every little act. Not one thing has gone unnoticed or unappreciated. Thank you!

Port's out!

I've been so excited for this day--it signifies the end of a difficult 8 1/2 months. Last night I got pretty worried. You see, Addie threw up--many times. I went to bed wondering if Steven would wake up sick and we'd have to postpone the surgery. But it all worked out--he's done and we are home.

Sitting in that waiting room was very emotional for me. I couldn't help but think back on all we've been through and some of our thoughts and worries as we sat there during the first two surgeries. During the first, we were waiting for biopsy results which came back to confirm the cancer. And of course, the second, we sat for so long worrying about so many things, most of which never happened. (On the other hand, things have happened that I didn't know to worry about!) Today's feeling was one of gratitude and relief to be done.

Steven was happy about it too. He wasn't one bit nervous and woke up from surgery smiling. From the minute he woke up, he wanted to go home and so he ate his slushie like a pro, watched a little TV, and then started getting dressed. I had to track down the nurse and tell her to come and let us go. She gave strict diet instructions to prevent nausea, but he would have none of it and started begging for a hamburger before he was even off the stretcher. And by the time we got close to home and he seemed fine, I gave in and bought him (at his request) a double cheeseburger. He could only eat half, but thoroughly enjoyed it.

We got to the hospital at 8:30 and were home by 1:00. He's resting now (okay, sort of) and feeling great. And me? I even spent a minute starting my to do list. Now, all I need is some gumption to get started on it!