Steven was nine years old when he was diagnosed with osteosarcoma in February 2011. His knee was amputated in a procedure known as Van Ness Rotationplasty. He is determined to beat cancer.
For those of you who faithfully follow my blog, I am so sorry to have been deliquent lately. I wish I had a great excuse for my neglect, but I don't. On the days when I think to myself, I should update the blog--sometimes I can't even get through the thought without pushing it aside. For some reason, the blog just isn't calling out to me. I feel like I am just wanting to move on or something and the blog just reminds me of cancer.
I am forcing myself to post today because I fear that some people take my absense to mean that something is wrong. I am happy to report that life is great. Steven is doing so well. This week he got his new leg and has been amazing us every day with his new physical feats. Yesterday he spent over an hour on his scooter. He had tried it once with his old leg and it didn't work--he just didn't have the strength. When he tried it yesterday, he was up and going--just like the old Steven. After scootering around, he went to a friend's birthday party where he walked all around, hiked up steep hills, and walked the quarter of a mile from the park to his friend's house without crutches or complaining. He is getting stronger every day--he hardly uses his crutches at all anymore, and while he still limps significantly, it gets better every day. He loves to show me his tricks on the playground, like scaling the climbing wall or sliding down the fireman's pole. It is like he is one again and so proud of himself. When he gets home from school, he usually has a new accomplishment to report--like playing foursquare without crutches, or climing the steps to the upper playground.
As has been the case for the last few months, Steven continues with his happy and positive outlook on life. Everything is a new adventure and he rarely says "no" to any suggestions for fun. He looks forward to school every day and (as has always been the case) he does whatever he can to get us out the door on time. Being late to school just won't do.
And life around here is going by fast. We are finally feeling like we can buy a house, and so the search is on. I want nothing more than to start packing, but I guess since we haven't even seen a house that we would buy, it might be a little premature. We should hear about when we go to Hawaii sometime this week. On Friday Steven competes in the state geography bee. He hasn't been studying too hard, so we'll see how it goes, but it should be a fun break from routine anyway.
I've been obsessing about getting a family photo done--if I've learned one thing this year its that life is too short. We finally got them taken on Thursday. I tried to upload some, but I think my blogger account is full and I need to add some memory. Here is one of just Steven--you can see that his hair is looking great these days.
I really need to post a picture of his new leg--I promise I will very soon. He has gone to bed for the night as I finish up this post and I don't have one taken already. See? I told you something was wrong--me who has documented every stage of this and I have failed in a week's time to get a picture of the new leg. He went with a Hawaiian theme for the pattern on the leg--kind of fun. P.S. Sorry there are no paragraphs! I guess I need to figure out this new format--or maybe use a diffrent browser. Either way, I'm going to bed now, but I do apologize--I put them in there!
I've mentioned before that Steven has been waiting, maybe a bit impatiently, to hear from Make-a-Wish. He has expected them to show up at our door any night with information on his wish. Sometimes, he would even wait by the window, and watch for his wish granters. He would ask me constantly if they had called and when they were coming. I started answering that they would come when he least expected it.
Well, I was right! They surprised him on Thursday at the Cub Scout Blue and Gold Banquet, which was already planned as a luau. Our wish granters had some Polynesian dancers from BYU come to entertain us. After their first number, a hula, they called Steven up on stage to tell him that his wish to Hawaii would be granted! I was amazed that he didn't figure it out before it happened--he told me that he didn't realize that it was Make-a-Wish until he got up on the stage and saw his wish granters. They went all out for him--there were several people there with gifts for him--shirts, sandals, snorkeling gear, leis, chocolates, balloons, and his favorite--a big book about Hawaii. After the presentation, they performed a Haka dance and then taught the scouts to do it as well--it was darling.
One of these days, I need to make a video of all the fun. For now, here is a clip that I love--all of it together made me cry. I love when Steven hops up on the stage--this is my Steven who has been on crutches since May, essentially.
When they read his wish, I was just filled with emotion--gratitude and joy and humility. After it was all over, I asked if he was okay with such a public announcement. He once made me tell the granters that he didn't want something like that. He said, "Well, no one said, 'No fair! You get to go to Hawaii!', so I guess it was okay." It finally dawned on me that he just didn't want to rub his good fortune in to others. I must admit that I get it--it feels strange to be in the spotlight and receiving such a grand gift.
And grand it is, I must say. Just the thought of Hawaii makes me smile and when times feel tough, there is nothing like the thought of sunshine at the beach to lift me up. We don't know when we are going yet, but we do know that we will stay in Hawaii for 5 nights and are going to the big island, Hawaii, where the volcano is. And yes, it is for the whole family, so even the little girls will be coming along this time. In some ways I can't wait, but I also love having something to anticipate, so however long we wait, that is okay with me.
Thank you, thank you Make-a-Wish. How do I even begin to express my gratitude?
Steven and his awesome haka face.
The dancers were so nice. As we were visiting afterward, it dawned on Steven that Make-a-Wish had invited them and not the scout leaders.
Here we are with the dancers and his wish granters, Gloria and Tiffany. Thanks everyone!
Steven has been doing so well with his new leg. On Sunday he decided not to take his crutches to church and to keep his leg on all day. He wore his new leg all day yesterday and today and has had no problem with it. He tells me he isn't using crutches around the classroom either, but I am having him take them to recess. His walking isn't amazing, but it is pretty amazing that he can walk.
Here is a picture of his leg--unfinished, remember:
It may be hard to tell from the picture, but he can stand up straight when he wears his leg--it is really cool. The best of all is how much he loves having a leg.
Today at school he found out that he made it into the state Geography Bee at the end of March. He was so excited--when I picked him up from school he said, "Mom, do you think we could get donuts today?" I asked him why we would get donuts and he said, "To celebrate!" He was smiling so big--he couldn't wait to tell me that he made it to state. Once we were all in the car and on our way, he started having second thoughts about the donuts and asked if I would take him to Barnes and Noble and buy him a "celebratory book" instead. I thought I'd be super generous and do both. Rob has all the kids at the bookstore now and Steven even went without crutches.
He is really just so happy lately--we went swimming yesterday and he was a little fish--I don't know if the backwards foot gives you kind of a propeller advantage or what. We've taken him swimming many times, but he was having so much fun yesterday, I couldn't help but think of a time we went swimming when he was still in treatment and he was cold and pale and shivering and begging to go home the whole time. A totally different experience.
We got snow for President's day weekend and he, Andrew, Rob and the cousins had an "epic" snowball fight in a fort that the boys built. Though most of the snow has melted, thier tall fort still has some remains in the backyard.
So there is my random update--good times! And they are back from the bookstore now and I kid you not, he spent his own money to buy a book about grammer. (There is a bit of a backstory on that one, but the fact remains that he bought a book on grammer!)
(Or #3, depending on how you are counting) Yesterday we had an appointment at Shriners with Scott, the prosthetist that is making Steven's leg. We had a lucky surprise--we got to take the unfinished leg home with us to try out for a few weeks before the finishing touches are made on it. I am too lazy to upload a picture right now, but it certainly looks different from the last one and it functions a bit differently too. Steven can stand up straight and is already doing very well with it--his physical therapist thinks he is already doing better than he ever did before. I must admit that I'm a little nervous about the leg in general--worried that Steven will break his leg again by falling in a weird way. He needs to break it in slowly and so I didn't let him take it to school today. He was so disppointed--he really loves wearing his leg. I guess I will let him take it tomorrow--I will just hope that he actually takes it off at some point. Last time around, Steven didn't got much for the "breaking in" period--he wanted to wear it all the time.
One year ago today was the scariest day of my life. I know I've written some about the day Steven was diagnosed, so I apologize if I am being redundant, but now that I am a year away from it, I need to write it down. It is one of those days that totally changed my world and many of the details are etched in my mind.
The night before, I finally actually saw Steven's swollen knee and knew that it was more than him faking a limp. (Yes, that was one of the explanations I had for his limping--I'm that cool.) I sent the boys off to school the next morning and started on my morning chores. I wasn't thinking much about his leg, but when I noticed that it was past 9:00 and the doctor's office would be open, I called and described his symptoms to the nurse. I felt sure she would tell me not to worry about it (and I wasn't really worried about it), but instead she said the doctor could see him that very morning. I headed up to the school to pick him up and took the girls along.
Dr. Schmidt examined him and ordered an X-ray. Through this all, I had no inkling that anything serious was the matter. In fact, even after the X-ray when he asked us into his office and offered that his nurse would entertain my girls, I had no clue that my world would be turning upside down. I wondered if all the exam rooms were full--it didn't look too busy. The nurse handed the girls some paper and crayons and the doctor very somberly told us that the X-ray revealed a bone tumor. He asked if I would like to call my husband. I was really confused--what causes bone tumors? He was using words like "malignant" and "benign", but cancer really didn't cross my mind at all. I still can't decide if it was the classic denial response that often happens in a diagnosis, or if the concept of cancer in my child was so beyond any thought I had ever had that I couldn't connect the two. Or maybe it is both and that is how denial happens.
He asked us to wait while they called Primary Children's hospital and made an appointment for us for that very day. We went into the waiting room and I tried to wrap my mind around what was happening. At this point, I still had no clue that we were looking at cancer. Just the week before, my sister had confided to me that she had found another melanoma tumor after over three years of being cancer free. She still hadn't told many people, including our parents or her kids. She was still waiting to see what the extent of the cancer was. I texted her: "I'm at the doctor with Steven. He has a bone tumor. Not sure what it all means." She says it is the worst text message she's ever had. I didn't elaborate--I needed to let Steven play tetris on my phone while we waited. She and my mom headed toward my house to meet me and take the girls while we went to the hospital. Alisa felt like I needed to be better dressed for the appointments and after finding that I didn't have anything cute clean, she traded me shirts and decided it would have to do.
Finally, we had an appointment and the post-it note with the info on it (Hematology/Oncology 4th floor) was my first clue that they were thinking cancer. I think it is there where my memory starts to cloud up. Rob met us somewhere--I think at the hospital, I don't remember. Someone took my girls, probably Alisa, and my mom ended up coming to the hospital at some point, too. Steven and I must have gone to the clinic and later met my mom and Rob because I have video where we are alone and waiting. We later went downstairs for scans and an MRI. And then back upstairs to meet with doctors. My dad came as well. At one point we had Steven, my parents, Rob and me plus a resident and a doctor all in the little clinic room. I was feeling self conscious because there were signs everywhere discouraging family gatherings at the clinic, but their support meant the world to me. I felt like my foundation was being yanked away.
After discussing chemo at the clinic, we went over to the orthopedic clinic to meet Dr. Jones. By this time, it was after 5:00 and all the patients were gone. We had our little entourage, and he also had a resident with him, so he invited us to just talk with him in the waiting room where there were chairs for all. The way he talked really put Steven at ease. Dr. Jones explained that the chemo would be like taking a sledge hammer to the cancer--and afterward Steven like to explain chemo with that image. I remember my parents telling Dr. Jones about Alisa's cancer and confidently explaining how she was NED. My heart was breaking for them because they were about to find out that it wasn't so and I was having a big taste of what it feels like to have a child with cancer.
We came home that night to a clean house and pictures and cards from my kids and Alisa's kids. Yes, now that I write this, I am remembering that she must have had my kids. I couldn't sleep much that night as my mind raced with fear and anxiety. The next day Steven needed a biopsy to confirm the diagnosis. We were to report for surgery around lunchtime, I believe. I sent him to school the next morning. Looking back, I can't believe I did that. Maybe it was the denial, or maybe I was starting my personal fight to keep our lives as normal as possible. At any rate, I believe he even told his class what was going on. I don't remember.
And the rest is well documented on the blog. In July, my cousin, Eric, made a video for a Relay for Life event and included a section about Steven. I have been wanting to post it for a while now, and I think today is a good day to finally take the time to do it because it includes some video from the first few days of diagnosis. The part that shows Steven reading a book, waiting in the clinic is so hard to watch because all the feelings of that day rush back to me. Steven really won't watch that footage--it is just too hard.
I don't really know how to take a day like today. Do you celebrate or mourn? I don't feel like doing either, so instead I will just remember.
Here is a picture of Steven shortly after washing his hair--after it dries it gets wavy or crazy rather than curly. One of his nurses called it the $100,000 perm. That is so true, except the price is a little outdated. I still have only trimmed up the ends--it is just too much fun to see so much hair.
Today Steven got his class picture back with pictures that were taken in October. He had just a bit of fuzz on his head at the time the picture was taken and he still had that chemo look to him--a bit tired and pale. He was so embarrassed by the picture that he didn't want to show it to us. (He forgot that we had all seen it months ago when it came home as his school picture--the class picture takes a lot longer to come out.) He said, "I want to tell other kids going through cancer that they should wear a hat in their school pictures." I thought it was pretty funny. I don't remember the day he had pictures taken or if we discussed a hat possibility. At the time, he wasn't wearing hats very often. We were just so used to the bald head, that it didn't bother us. But now, with his full head of hair, I think he is a little shocked when he sees that old look he sported for so long. I have to say, I'm glad that the chemo look is behind us enough that it looks foreign.
Steven had two appointments this week at Shriners--one with Sonya for physical therapy and the other with Scott, his prosthetist. Both appointments went really well--Dr. Jones even came down to meet with the prosthetist with us. Talk about going the extra mile! I am feeling really good about this new leg--that it will really get Steven walking.
When Sonya first saw Steven and had him do some exercises, she was amazed at how good he looked. She felt like he was better off now than he was before his break, with maybe a few minor exceptions. She had him standing in his brace and he was holding himself up just fine. Scott was also impressed with how straight Steven can get his leg. Of course, this new position is going to require a new prosthesis, so we have now officially started that process. It will be almost four weeks until he gets his leg and get started walking with it.
All in all, it was a hopeful feeling. When Steven first broke his leg, I never would have guessed that it would end up benefiting him in the long run. I suppose time will tell if that is true, but so far it looks like it is so. Either way, I have been feeling much more laid back about the whole walking thing. Every time I go to Shriners and see other kids with a variety of problems, it makes me realize that no matter what the child's ability is, they find ways to compensate and do just fine. One little girl at therapy didn't seem to have any use of her legs. She was scooting around on her hands and getting around well. I thought about Steven and all his crawling and scooting and how he has really made do, and really, I am feeling like he will be just fine, even if he can't run around like a normal kid. For example, he was thrilled to report that the activity in PE this week involved hopping on one foot--and he is a hopping pro!
There is something really special about Shriners and I am so grateful for this amazing hospital and that we have one so close by. Where else can I carry around a prosthetic leg and not even get a second glance from the people around? Many people have asked me about Shriners, and I don't know if I have made it clear on my blog about how their services work. Shriners is a charitable hospital for children. It specializes in orthopedic condintions, but I believe there are some other conditions that they treat--very specific conditions, I don't remember what they are. To qualify, the child must be under 18 years old and have an orthopedic condition. Then, the hospital will treat free of charge to its patients. If you have insurance, they will bill insurance (that is a new thing--just a few years ago, they didn't even bill insurance), but the patients families don't ever have to pay. It is the charitable branch of the Masons--and I don't really get all that, but hence the masonic hats in their logo.
I just think it is an amazing thing--I knew nothing about Shiners before this experience, although I think I had heard the name. Never would I have anticipated being so indebted to them. We are blessed to have health insurance and I'm sure we could do this without Shriners, but when I was reasearching prosthetics and rotationplasty prosthetics in Utah, I really felt like this was the place where Steven would get the best leg. And then the physical therapy there is so much better for him, simply because it is a pediatric environment and the therapist works directly with the prosthetist to get what Steven needs. But then, I don't have to pay any copays to go, or pay for the part of Steven's leg that insurance won't cover. So, really, it has been a huge blessing. If any of you need a worthy organization to donate money, consider Shriners hospitals. I'm sure you won't be surprised if I do some fundraising for them when we get back on our feet (pardon the pun!).
