Tuesday, January 31, 2012

"You may breathe normally"

I am happy to say that Steven's scans were clean today! He had a blood test, a chest CT scan and an Xray. All looked normal (okay, the Xray has some crazy new bone growth, but no sign of a tumor). The CT machine said, "Take a breath in and hold it. [pause] You can breathe normally again." That is exactly how I felt when Steven's oncologist told us the scans were normal. The sun was shining as we left the hospital and I couldn't help but feel very hopeful. I think one of the hardest things about this is how it just feels so beyond my control and so unpredictable. What a lesson in walking by faith. But hooray! He gets to go on his fieldtrip tomorrow and is back at school this afternoon! That is a happy day.

Monday, January 30, 2012


I realize that I haven't been as diligent at blogging lately. I have noticed that because people who keep close tabs on the blog keep asking me things that I could easily blog about. So here are a few answers:

Q: When will Steven hear about his Make-A-Wish trip?

A: This is a question that Steven frequently asks me--probably about seven times a day. I don't know the answer. I will say that he changed his request afterall. One evening we were talking about Hawaii and out of the blue, Steven decided that Hawaii is what he really wants to do (ah, the fickleness of youth). Rob came into the room and caught the jist of our conversation and then asked if he had seen the news about the wrecked cruise ship. We hadn't heard about it, but once we did, Steven was even more certain that the Hawaii trip was for him. He needed to write a different letter and that letter was reviewed by the board on the 25th of January. If they don't approve that, his backup wish is for a regular cruise. We put our date of choice as the week of spring break, but we also said we could go whenever. So, we will see!

Q: When will Steven get to wear his prosthetic again?

A: This answer makes me kind of sad. Starting tomorrow, he is able to bear weight on his leg. We originally had an appointment with his prosthetist tomorrow, but that has been postponed until Feb 9th. Unfortunately, he isn't able to wear his leg--it hurts him terribly. He either needs an adjustment or a whole new leg. So, until we see his prosthetist (and maybe even for weeks after), he will not be in his leg. We continue to do PT and he is starting to crawl around on his foot. We will likely have him wear his brace until he has a leg, just to protect it.

Q: What does the brace look like?


Q: When are his next scans?

A: Tomorrow morning. I'm a bit worried.

Q: Why are you worried? He is doing great--surely there is no way he could have cancer.

A: Well, the scans are set up to hopefully find any cancer while it is still small--so if he did have cancer, there would be no symptoms yet anyway. The reason they are so close together initially is because the cancer is most likely to come back at the beginning if it will. With osteosarcoma, it can come back anytime in the next 10 years, but the frequency of the scans reflects how likely it is to return. He is very lucky that most people with his stage of cancer will never see it come back. But almost a third of them will, so the chance is certainly still there. Plus, the events of the last week shaken my faith in clean scans, you know? Also, a lung metastisis is a bad thing to have, so you know, the stake are high.

Q: Do you have a realtor?

A: Not yet.

Q: Is Steven's hair curly now?

A: Certainly more than it used to be and really curly when it is wet. We have trimmed up the back and ears a little, but so far, we can't bring ourselves to cut it. It is just too much fun to see all that hair!

So there you have it. I will try to quickly post the scan results tomorrow, so you aren't left hanging. We are praying hard for clean scans tomorrow! And then we can move forward with fieldtrips and science fairs and wish trips and walking and house hunting and helping Alisa in some small way.

Sunday, January 29, 2012

Trials--a discourse

So a few weeks ago, I was asked to speak at the adult session of our Stake conference. The topic was "how the gospel has helped you through your trials." I'm not usually too scared about speaking assignments, but for some reason this one had me worried. I didn't think I could do it without crying. And a few days after I said "yes," we learned about my sister's cancer. Anyway, I decided to read it almost word for word and not mention Alisa and I prayed really hard that I wouldn't cry. And even though I couldn't practice it without crying hard, I pretty much made it through the talk without tears. A little miracle, I assure you. It's a little long--the assignment was for 10 minutes. But here it is if you are interested:

The topic I was given tonight is how the gospel has helped me though my trials. For those of you who haven't heard our story, I will start with that and then share just a few of the ways the gospel has helped me through it.

My oldest son, Steven, who is ten now, started limping about a year ago. In February, it was getting worse and I took him to the pediatrician. I was shocked when the doctor found a bone tumor in an xray and then devastated when further testing confirmed that it was bone cancer. About a week later, he started chemotherapy. Steven completed 18 rounds of chemo, each round requiring 3-4 days in the hospital. For nine months, we watched him suffer the side effects--such as mouth sores, nausea and a weakened immune system. In May, partway though the chemo, the tumor needed to be removed and so he underwent a complicated amputation. In August, he was fit for a prosthetic leg and started the difficult process of learning how to walk. It was such a happy day in October when he left the hospital for the last time. It took a few weeks, but as his blood cells started coming back to normal levels, his energy level did too and it has been so fun to see him back and more excited for life than ever. Learning to walk has been a real struggle for him. In December, he had a simple fall in the living room that broke his femur. The chemo and under use of his leg had really weakened his bone. He ended up in surgery again--this time with more pain than ever. The bone has since healed and on Tuesday, it will be 8 weeks since the surgery so he will be able to bear weight on his leg again. Also, on Tuesday, he has another scan--something that will happen periodically for the next ten years to make sure that no cancer has spread in his body.

This experience has been hands down my hardest trial so far. When he was first diagnosed, I felt so much fear and anxiety that I even had a hard time breathing. After some time and after many prayers, blessings, I was able to eat and sleep again. As that anxiety left, I could see that I was at risk for depression and knew that I needed to do something about it. I considered professional intervention, but my time was so limited. I decided to make a list of things to do each day that would help me through. If I did the things on this list and my depression didn't improve, I promised myself that I would go see a counselor. Or, if I was so depressed that I couldn't do those things, I would go see a counselor.

My list includes things like exercising every day, studying my scriptures, attending church as much as possible, and attending the temple regularly. When I do these things, I find myself able to face my challenges with a bit more courage. Sometimes I read my scriptures and the words go right over my head, because I am too worried to focus. Other times though, I read a passage that fills me with hope.

One day, I was reading in the Book of Mormon, in Mosiah, and the story of Alma and his people really touched me. In the story, Alma was converted by Abinadai and later preached to others who were baptized in the waters of Mormon. They needed to run away from the wicked King Noah, so they ended up living near the Lamanites and essentially becoming slaves. In Mosiah 24:12, it says that they "did pour out their hearts to [God]; and he did know the thoughts of their hearts." They then heard the voice of the Lord who made them a promise. He said,

14 ...I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions.

15 And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.

I had read this scripture many times, but when I read it then, it had a new significance to me. I thought about all that I was dealing with and how I was actually able to do it. My burden was still there--we were in the middle of it--but He truly had made it light.

One way that my trials were made light was through the service of others. Eacah person who followed Christ's example and performed service for us was helping to lift our burden. Whether it was meals, babysitting, housecleaning, supportive words or fundraisers, the service of others really made this year bearable. Many times these actions were clearly inspired and I knew that God knew us and was meeting our needs through other people.

Throughout the year, I have had many instances where the spirit testified to me of the truthfulness of the plan of salvation. One of the friends I made at the hospital lost her teenage son to cancer. As she talked about the peace and comfort that she had about his passing, the spirit testified to me that truly God has a plan and that they would be reunited someday. The truth that families are forever offers a peace that can calm my often overwhelming fears.

In May, when Steven had his surgery, we faced some very real emotional stress. Choosing the right operation seemed daunting. We studied very carefully all the research we could find, and we also prayed that the Lord would guide us. Once the decision was made, we felt good about it. However, as the day of the surgery came nearer, we were worried. He would be in surgery for almost 12 hours. People all around us prayed and that day we literally felt the strength of those prayers. He made it through and recovered quickly. Rob and I made it through the day without too much anxiety and we experienced real peace that we had done the right thing.

Cancer is often a very public struggle. I have kept a blog about how Steven is doing and many people know about what we are going through. I realize that not all trials are this way. People don't usually send care packages when you fight with your spouse and most people don't blog about their addictions. But even in those trials that are personal and private, I testify that God knows us and if we go to Him, he will strengthen us. He is all powerful and He loves each one of us.

I would like to close with an experience I had that really hit home to me how much God loves us. During the priesthood session of the last General Conference, my sister and I went shopping. We found a great deal on some beautiful jewelery boxes and I just knew I couldn't pass it up for my daughter, Addie, who was about to turn 5. As we were about to leave the store, I remembered that I still needed a birthday gift for my niece's party on the following Monday, so I turned around and bought her a smaller and more simple version of the box. On Sunday night, after a weekend of listening (or in my case with four little kids at home, trying to listen) to the beautiful words of our prophet and apostles, I was putting my girls to bed. They were excited about the birthday party the next day and I told them I had bought a present for Lizzy already and that it was a jewelry box with a ballerina that spins around and plays music when you open it. Once I mentioned the ballerina, Addie started to bawl. Through her tears, she explained that she had always wanted a jewelry exactly like that. She asked to see it and when I showed it to her, she cried even harder. She wasn't throwing a tantrum or trying to manipulate me, she was sincerely disappointed that Lizzy would be receiving her dream.

I tried to reassure her that it would all work out. I suggested that maybe she would get one for her birthday. I said, "Who knows? Maybe it will be even better than Lizzy's?" "But Mom," she said, "there isn't a better one than Lizzy's. Hers is perfect." As we lay there in the dark, Addie still crying, it was all I could do not to laugh. I knew that she would love her birthday present. Then I thought about Heavenly Father and His plan for our lives. I thought about my limited knowledge of the future and of the eternities. It hit me very hard that I have no idea what Heavenly Father has in store for me and my family and also felt very strongly that whatever it was, and whatever the outcome of Steven's cancer, that it would be wonderful.

I testify that Heavenly Father loves each one of his children. I know that He has the power to lift us up in times of trials. He will not always take away the heartache or the situation. But I want to stand as a witness that indeed God does know the thoughts of our hearts and will visit us in our afflictions. He will also give us the strength that we can bear them. I know that families are eternal and more than ever, I want to live in a way that will bring me and my family back into the presence of our Heavenly Father.

Saturday, January 21, 2012

I. Hate. Cancer.

If I haven't officially declared my passionate dislike of cancer, let it officially be known. It is a complicated feeling because yes, I realize that there are worse things and yes, there is a lot of growth that comes from suffering. I am just tired of watching people I love go through this kind of refining. If you haven't heard, my little sister, Alisa, had scans this week which revealed cancer in numerous places, including her liver and bones. Thankfully it is not in her brain and thankfully there are several treatment options for stage IV melanoma that she can try, all of which offer some hope. There is a link to her blog on my sidebar if you want more details.

I don't really have anything insightful to say and I even feel at a loss for words and action when it comes to her. She has been so proactive this last year, always doing, saying, or organizing exactly what we need. And then when it is her turn I, who am the only family member with firsthand cancer experience and one of the people closest to her, can't even get out of bed in the morning. Kind of goes to show just how weak I really am.

I thought I realized how much I love her, but these last few days, it has hit me with an unexpected force how important she is to me. She was born just 18 months after me and I would say there is probably no one else on earth who understands me better. But this isn't about me. What I need now are prayers for my sister. I am praying for her to have the strength to face the hard treatments she is facing, and I am also praying that the treatments will work.

Thursday, January 12, 2012

10 years

Tuesday (Steven's birthday) came and went so quickly. We started out with an appointment with Dr. Jones at 8am. The xrays looked great--even I could see the new growth and Dr. Jones had his assistant take Steven's cast off and ordered a splint to be made for him. He wants us to be able to work with Steven's foot to get it more flexible and strong and ready to use with his prosthetic. During the whole appointment, Steven was really worried that he was going to be late for school, he especially didn't want to miss P.E. :)

Here are some of the promised Xray pictures. This first one was taken on December 14th. My camera doesn't do it justice, so you may have to click on it and look at it prettly closely to see why I was alarmed when I saw it.

This is the same position on Tuesday, a month after the first was taken. Can you see the new growth at the fracture?

The splint order turned out to be a little more complicated than Dr. Jones anticipated. After a try at the orthopedic center, I called Shriners to set up an appointment with Steven's prosthetist. My calls weren't immediately answered, so in the meantime, Steven went to school. As I was in the middle of making Steven's birthday cake, I got a call from Shriners saying they wanted us there in an hour. So, I packed up the cake batter, the sleeping girls, and headed to the boys' school where I picked them both up and then dropped off the girls and the cake batter at my sister-in-law's house and asked if she could please bake the cake. (Which, of course, she kindly obliged.)

Steven was really dissapointed about being plucked from school for an appointment. His class sings "Happy Birthday" at the end of the day, so he hadn't passed out his treats or gotten his birthday attention before I checked him out early. He was crying when we were alone in the office. When I asked him why he was so sad, he said, "Today isn't going at all like I expected!"

I was thinking about the last year, since his last birthday when he was starting to limp, how so little since that birthday has turned out how I expected. And how our multiple trips to the doctors and my mother and sisters babysitting my girls, and unexpected medical needs of the day summed up the last year well. And later when he got a special birthday dinner surrounded by people who love him dearly and where he was showered with presents, I thought that also represented the attention he has been given all year.

By the end of the night, he went to bed happy. He was able to take a bath and we let him sleep without his cast. Things turned out well for him afterall. Today his splint was ready and we spent the morning getting it fit. It isn't perfect, but he only has to wear it for a few more weeks and then can very gradually start bearing weight. (Since the cast was cut off until he got his splint, we had been wrapping his cast back on his leg with an ace bandage.) Between the resetting of the bone and the fact that his foot has been stretched out in the cast, he can already straighten his foot out so much better. I'm wondering if he will even need a new prosthetic right away. We should know soon.

These ten years since Steven was born have been the best of my life. His birthday is particularly special to me because on that day I became a mother. Nothing could have prepared me for all the wonderful and difficult things that come along with motherhood. I grew up the oldest of nine kids and thought I knew what to expect. The moment I heard Steven cry, I knew that I would do anything for that child and when I saw him, I finally believed in love at first sight.

Happy birthday, little Steven. May your year be full of the wonder and curiosity that has marked your whole life. I wish you many happy birthdays and I hope that you will never have to spend one at a doctor's appointment again!

Sunday, January 8, 2012

Great days

This has been a great week for Steven. School has gone really well--on the first day back I asked what he did at recess (he had decided to read a book so he wouldn't worry about falling), and he admitted that he played soccer instead. How you do that with one leg, I don't know, but there you have it.

He woke up excited for school every morning and one day I asked him why he was so excited. He said, "Just for school! You never know what kinds of fun things are going to happen!" Turns out, his school days were pretty exciting this week. On Friday, he competed in the school geography bee and won! I have got to get some video for you--it was classic Steven. He was bowing every time the audience clapped--while sitting in his chair. His class was so excited for him--they all ran up after to give him a high five. For sure it was one of those glory moments. He will now take a test to see if he qualifies for the state competition.

On Friday afternoon, in a last minute grasp at sunshine, we invited all the boys in his class to the park for a nerf gun/capture the flag game. His birthday is coming up this week and this is how he wanted to celebrate. The boys had a great time--some told me it was the best party they had ever attended. The preparation was very low stress, but the actual party was pretty intense. It was over quickly, though, and for the amount of excitement it generated, it was well worth it.

Yesterday Steven finally got to go to the wishing room and declare his wish. What a magical experience! His amazing wish granters had put together a pirate party, and the kids got to go on a treasure hunt around the building as we learned a little about the history of Make-a-Wish. It was really touching to see all the kids that have been helped by this amazing organization.

We all got to throw a coin into the wishing pond (which didn't have water, but did have snow) and we got to write wishes down for Steven. After that, he used his key to open the wishing room. It was a room full of lights with a fountain--it was awesome and well worth the wait. We all got to read our wishes for him there. I asked him whose wish he liked the best and he said it was Alisa's. She said something like, "I wish you a life full of adventure and a passport full of stamps." Andrew orginally wished him a happy birthday, but before we read them, I encouraged him to change it to "many happy birthdays." Addie was one of the last to read hers and when it was her turn, she started to cry. I really think it was because she felt like her wish of "HAWII" wasn't quite in line with all of our grandiose, long-life sort of wishes, but Rob thinks she was just embarassed to be the center of attention. At any rate, I read hers for her, and changed it to "A trip to Hawaii someday." So you see, I wanted every wish to count for a long life for him, so I even tweaked my other kids' wishes! My only regret is that I didn't wish for something like "I wish that you will attend your Aunt Alisa's 90th birthday party." I mean, as long as we are wishing...

After we read our wishes, Steven submitted his wish to the wishing wizard. So many people have asked what his wish is, and I haven't been able to say for sure. Even now, I'm not sure what will happen. I will tell you that his first wish was for a Disney Cruise. Because of the economy, Make-a-Wish doesn't normally let the kids pick a Disney cruise. However, our wish granters encouraged Steven to write a letter to the board, and they may let him go. I've mentioned before that I would rather not ask for an exception, but he wrote the letter himself and I suppose what happens will happen. His second wish is for a trip to Hawaii. He has had a hard time deciding because he would really like to go to Hawaii, but he also really wants a reason to get a passport. We do realize that he may not even get his passport stamped on the cruise option, but he would still really like to see another country.

So that is a very long post--woah! A new week awaits--on Tuesday, he will turn 10 years old--it is his magic birthday! And really, it does seem like magic. He has had a wonderful year so far. Last night as he was going to bed (this was after the wish party), he gave me an extra long hug and told me he was so happy. He said, "I really will be happy with any trip I get to do for Make-a-Wish. Everything sounds like so much fun." He may have been talking about he wish trip, but truly, to him everything does sounds like fun right now. And there is something so hopeful and exciting about being around him--you just can't help but think that life is great and that it holds all kinds of hope.

Tuesday, January 3, 2012

Happy New Year

I've been trying to post something for a few days now, but every time I try to think of something profound, it doesn't sound quite right, or quite profound, anyway. I really am looking forward to 2012 this year with some bright hopes. Hopefully we'll see no cancer, hopefully we will find a house that will be right for us, hopefully we'll get to go on a fun Make-a-Wish trip, and hopefully Steven will walk.

One thing that happened to me with cancer is that I really started to live in the moment--thinking ahead, even to dinner, was too much. Planning was impossible for me. I think that looking ahead was so uncertain and unknown that it was easier to just think about the present.

I started to snap out of this about a month or so after chemo was over--and then Steven broke his leg and I was back into my bad habit. My confidence was a bit damaged and we went back into survival mode. He is doing really well now, and as his foot is healing, so are my hopes. Still, after what we have been through this year, I don't know if I will ever lose the understanding that things don't always go as you hope.

He is back at school today. He was feeling very nervous about going to school--mostly to recess. He is afraid of falling again. Thank heavens for the sunshine and that there is no snow or ice to worry about. When I dropped him off at school today, I got to see his friends give him a super excited, running hello. He will do fine--he may even decide that reading a book at recess just won't cut it for fun.