Saturday, December 24, 2011

Wishing, part 2

Where has my week gone? Sorry I left you hanging with the wish. Life is busy enough as a mom of four, but then add Christmas, and our anniversary and there is little time for blogging. I have been trying to simplify--I'm not sending Christmas cards or taking gifts to neighbors. And for once in my memory I haven't baked any goodies at all.

Not that we are being deprived of sweets. So many people have remembered us this Christmas and we are feeling very loved and very humbled. Thank you Anonymous for all the many ways you've helped our family this year and this season. I don't know where to send the thank you notes, but you all know who you are.

So, the wish. On Monday afternoon, Steven's wish granters called and told me that the wishing room was still broken, but they wanted to come over to our house and visit with Steven and get the paperwork started. Then when the room is fixed, Steven can go and officially declare his wish. She then asked if Steven knew what his wish was and I told her that he wanted to do a Disney Cruise. "Oh, Make-a-Wish doesn't do Disney Cruises anymore for financial reasons, but he could do a regular cruise or Disneyworld--just not the Disney Cruise."

Well, try to imagine how that went down with Steven. I got off the phone and told him the news and he shed many tears of bitter dissapointment. They were coming in two hours and I suddenly needed to get my house clean and help Steven stop crying so he could think of a new wish. Luckily, my youngest sister, who was home from college, was at my house and helped with all of these things. By the time the wish granters came, Steven was ready.

We played the wishing game and they asked him about all of his favorites. He had ready answers for all of them, including a truth-or-dare question from the game about where he has a scar, "On the top of my head where I had a mole removed." We all thought this was pretty funny considering his foot is on backwards, but he didn't see what was so funny and was a little embarrased that we laughed.



When it came down to the wish, we discussed different kinds of trips that would be just as fun as a Disney Cruise. The other wish granter told him that he may be able to write a letter to the board and convince them that he needs a Disney Cruise to fulfill his wish. Personally, I feel like beggars can't be choosers, and that another trip would be just as fun anyway, so if I have any say, he won't be writing that letter. But in an effort to get to the bottom of what would really make him happy, I asked him, "Steven, what would you tell the board in a letter? Why do you want to go on a Disney Cruise so badly?"

"Well, it looks like so much fun," he said, and then his bottom lip started to quiver, "And it's just that my family has never been on a real vacation." Oh, boy, now they are going to feel sorry for us! For the record, we have been on family vacations. True, none have been to Hawaii or Disneyland, but whatever.

In the end, he loved the idea of seeing a volcano in Hawaii and he also thought a cruise still sounded really fun. His job is to decide between those two wishes in the next couple of weeks. He may even get to do a cruise in Hawaii--we will see.

Here is the picture that they will put up on the wall at Make-a-Wish:



By the way, Steven is doing just great right now. Since Monday he's been up on his crutches and off pain medicine. He went to school again on Wednesday and was playing dodgeball last night at the family party.

Hopefully I'll post for Christmas, but if my life gets super crazy, I truly hope that all of your wishes come true this Christmas.

Sunday, December 18, 2011

Wishing....

Yesterday Steven was supposed to declare his wish at the Make-a-Wish wishing room. Unfortunately, the room was broken (let's hope that isn't some sort of omen!) and we had to reschedule for tomorrow afternoon. He was pretty disappointed, but got over it and is really looking forward to tomorrow.

I won't have time to post about the wish declaration for a few days, but before he wishes, I wanted to list off all the things he has considered for his wish. This is a kid who studies maps for fun and has a variety of interests and passions. He has pondered his wish for all the months of his treatment. In fact, if he is ever feeling down, we can usually distract him by talking about what he wants to do for his wish. He has had a really hard time coming to a final decision, in fact, I'm not even sure he knows it yet. I guess we will know by tomorrow.

So here is a partial list of ideas he has considered (in no particular order). These are only the ones he has thought about--some he has thought of on his own, while others have been suggestions from others. I am not listing the ideas from other people that haven't interested him. For example, he hasn't considered a trip to Florida no matter how many different ways I try to spin it.

Unlimited wishes :)
Trip to Fiji
Trip to Hawaii (to see a volcano)
Trip to Mexico
Shopping spree
Lego room
A clubhouse
Trip to Yellowstone (to name a gyser)
European tour
Disney Cruise
2012 London Olympics
A giant coin collection
Legoland Denmark
African safari
Trip to the Galapagos Islands

He has gone to bed, or I would ask him if I have forgotten any. I know I have--for a while he had a new idea every week. Some of his ideas are very impulsive. For example, when he wanted a giant LEGO set, I asked him if he would even have the patience to put it together. "Well....no, but Andrew could do that for me!" Or once he thought of a video game room and I pointed out that it would be pretty lame to wish for something I wouldn't let him use very often! Oh yeah, and the fact that we have no house (details). Anyway, we are looking forward to tomorrow and to whatever comes of it. I can't even tell you how helpful it is to have something fun we can dream about!

By the way, Steven is doing much much better. He is totally off pain meds now and for the first time tried hanging his leg down and did just fine. Hopefully we'll get him up on crutches tomorrow, if even for a little bit. He is a little nervous about school because he has a substitute for the next couple of days, so he may not go again until Wednesday.

Friday, December 16, 2011

Okay, so....

On Wednesday day morning, I took Steven into see Dr. Jones for a follow up appointment. Before we saw the doc, he needed some Xrays. Getting Steven on the table and putting his leg in the position they needed for the pictures was excruciating. He was screaming through it all and the techs were trying to get what they needed as fast as they could. I had every intention to take pictures of the xray, but with all the drama, it slipped my mind. So now I will just have to try to describe what I saw.

Let's just say, that at first glace from my untrained eye, I saw immediately why Steven is in so much pain. In fact, it made my stomach churn. When Dr. Jones said he broke it the other direction, he wasn't kidding. Even the techs were really confused about why a cast was on and his bone looked like that. Imagine taking a stick and breaking it in half. There are jagged edges all around it. Now set it at a slight angle--the jagged parts are jutting out. That is my small attempt to describe what I saw.

Dr. Jones said that everything looked good--it was what he expected to see. So, I guess that is good news. I asked him how it would grow back--he said that eventually (as in a few years), the bone would look smooth again--crooked, but smooth. In the meantime, Steven is in extreme pain because unlike his surgery, or even the orginal break, there iis no metal plate holding the pieces together. As Dr. Jones put it, the muscles and cast are holding the bone "in the general zip code" of where they are supposed to be and until the bones start to knit together, every little movement makes the bones with all their nerves rub together. Sounds awful, huh?

On the bright side, Steven seemed to be in a little less pain yesterday. He even made it to school in the morning, and moving him wasn't too excruciating. He is still taking pain medication, but he isn't needing it every three hours like he did before. He is still in the wheelchair and trying to keep his leg as still as possible, I guess the improvement I see is that he is moving faster as we transfer him from one place to another. He is in excellent spirits for the most part. Going to school did him a world of good as the kids in his class gave him a warm welcome and he was able to catch up on some things. Today he won't go because the 4th graders are going on a ski trip. Back when they were planning this and we decided he wouldn't go, I felt one of those twinges of saddness that he couldn't do what the other kids were. But now skiing is so beyond his abilities that I am mostly just glad I don't have to figure out how to get him to school today. The sadness comes about things like the fact that he can't use the bathroom without assistance. Funny how my perspective has changed.

He goes back to see the doctor in mid January again, and when he does, I promise I will get pictures of the Xrays.

Tuesday, December 13, 2011

Christmas expectations

As the days tick past, we are seeing gradual improvement with Steven's pain levels. He is taking less and less medicine and is moving a little faster. But when I say a little, I mean a little. He is fine as long as his leg is in a certain position, which is straight out in front of him, or a little elevated. So moving him consists of holding onto a pillow which holds his leg (almost like a sling) and then he moves himself slowly with his arms and other legs into his wheelchair or out of it, depending on where he is going. On Saturday we were able to take him to the movies and then he went to sacrament meeting on Sunday and to his grandma's house. Moving him in and out of the car is the hardest of all, but it can be done. I may have mentioned before that it takes about two weeks for the bones to start to knit together to where it doesn't hurt as badly to move.

He is sleeping through the night (usually) and in a happy mood. Yesterday we had a bit of a set back--he was doing homework on the computer and the keyboard fell on his toes. He is in more pain today and blames that little accident for the slide backwards. Who knows?

Still, there is no denying he is in a holiday mood. Last night we put together a gingerbread house and all the kids were loving it. I got fed up with being bossed around by my kids who all had ideas of their own, so I quit my job as the frosting person and moved to clean up. Steven said, "Okay, that means I'm first in command now!" He also said, "Okay, so tomorrow, let's make a gingerbread village from scratch." He has some big ideas--too bad he's lacking the mobility to really make them happen!



I have been thinking about the timing of his fall with Christmas coming up. I had big plans for this month. Anyone who knows me knows that I like to go places. For Christmas, I gave my kids an advent calendar with a fun thing to do every day and told them that was their Christmas present from me. Some things are stay at home things like making cookies, but others were fun adventures. It has been hard to let go of some of the plans as our situation changed last week.

I've thought a lot about President Uchdorf's talk at the First Presidency Christmas devotional. He talked about expectations and how we can get disappointed if Christmas doesn't meet our hopes of perfection. He also reminisced about a Christmas as a little boy where he burned down the living room curtains with a candle from the tree. Both points were very meaningful to me--that Christmas doesn't have to be perfect to be filled with love, and our children deserve our love, even when they make mistakes.

I thought a lot about Andrew and how his little shove has had such big consequences. I realize that this isn't his fault--it isn't his fault that Steven has such brittle bones. I have had a good long talk with Andrew about how it was just an accident and he is not to blame, but I think he still feels really bad. We have got to figure out how to make sure he never doubts our love. I guess that is the goal of all parents, really.

In the end, I haven't come to any real conclusions or had any amazing epiphanies--but I know there are some profound lessons to be learned here if I ever get a minute to think very hard about it. In the meantime, I am working on changing my expectations. Hasn't this year taught me how to do that yet? I guess I need to hurry and learn!

Thursday, December 8, 2011

Hair--2 months out


So, today is the two month mark from Steven's last chemo. His hair is longer than ever, and coming in much lighter than it was. What? At first he thought it was grey--it does seem to lack some of it's old colorfulness.

He has had a better day. He is still extremely careful with his leg and will only move very, very slowly in and out of the wheelchair. He is in good spirits, though. In the picture, he is playing with bubbles and dry ice. He spent a long time making a popcorn string--somehow he is still obsessed with the Christmas tree. Most of his anxiety about moving is gone. Okay, he is still worried and careful, but he isn't hyperventilating and crying anymore.

Someone asked when he would be going back to school. I don't know about that--I am almost positive it will be before the 8 weeks is up. He probably won't make it back next week, but I bet he will by the week before Christmas. Okay, I hope he will. If he doesn't go back and he continues with his obsession, we will have the most decorated tree in town. I will have to take a picture--I have been very generous and let my kids do most of the decorating. It is pretty special!

Wednesday, December 7, 2011

Home tonight

Steven made it home this evening and he is so glad. It was not an easy process. He needed to get into a wheelchair and then into the car. It took about an hour to get him into the wheelchair. He had some serious pain and probably more than anything, some serious anxiety. The nurse was really pushing him--he wanted to stay and she wanted us gone--and he was getting bugged by her. When she left the room (and he was sitting on the side of his bed), I said, "Don't you want to go home so you don't have to have nurses boss you around?" That did it (and the mention of the Christmas tree). And then he overcame whatever it was that wouldn't let him move into the chair. It wasn't easy, but here we are. Lets hope the days just keep getting easier in his recovery! I guess that is the general idea. They say it takes about two weeks until the bone has made enough fibers to hold it together so that it isn't rubbing against itself and irritating nerves inside the bones. Two weeks is when he sees the doctor again.
Steven's pain has been under control. . . as long as he holds still. He is eating, but to go home we will have to move him, so my best guess is that we will be here another night. He did have a good night--he slept from 10 till 4 with no morphine (but with Lortab) but we wanted to shift him to avoid bedsores around 4, so he got morphine. He has had no trouble going back to sleep all morning as docs and nurses came in. He just told the nurse that he couldn't go home today or tomorrow. This from the kid whose main goal has always been to get out as fast as he could. He was so sure of himself, he must be in some serious pain. Hopefully he will improve faster than he thinks.

Yesterday morning, the kids woke up and started decorating the Christmas tree. He got really excited about ornaments and has been wanting to make some. We did one yesterday while waiting for surgery and he woke up this morning wondering if I finished it and if we could make some ornaments today. Luckily Kids Crew has a craft mecca, so maybe he can do some of that today. Steven is not a crafter, but he is so excited about Christmas.

Tuesday, December 6, 2011

Surgery

I wasn't planning on an overnight stay at the hospital tonight, but here we are. Not my first choice, but oh well. I am tired and busy and my keyboard is at home, so I will give a short update.

This morning we rushed out the door to come see Dr. Jones and get a cast. Dr. Jones still hadn't seen the xrays and when he examined Stevens leg he was struck by two things. First of all the splint from the ER came about an inch above the break, so it was doing more harm than good. One explanation for why Steven hasn't wanted to move an inch all weekend. Also, his leg was crooked. He looked at the Xrays and sure enough, the bone was bent. He said he wished it had broken the other direction, because he could have cast it as is and it would have helped Steven to get his leg straighter, thus helping with the walking. But as it was, he really felt like surgery would be best. He also decided to remove the screws and plate while Steven was under anesthesia and not going to be weight bearing for a while. This isn't standard because it isn't worth the risk of surgery and the inconvenience of not walking, but the screws can weaken the bone, so he thought it would be beneficial under the circumstances. Dr. Jones was willing to do the surgery right then, but unfortunately, Steven had eaten a bite of bagel with his Advil at my insistence before we left, so he had to wait 6 hours until he could go under anesthesia.

Steven was very unhappy about all of this and cried more than I have seen him cry in a while. He was really nervous about the surgery and the thought of being in a cast again. I must have cried all my tears because I have been okay. My sister brought her son over to keep Steven company until he had to go into surgery. It cheered him up immensely and he did fine. He was also feeling much better with the long splint that he had for the morning. He was finally able to move a little.

So we headed back to the hospital. James (my nephew) came along and distracted Steven some. If Steven ever paused to think about the surgery he would tear up. But he was in good spirits when the nurse practitioner came to examine him. She asked him what his pain score was and he said "zero" with a smile. At this point my sister had come to get James and she instantly thought of the Brian Regan sketch on a broken femur. You will have to look it up on you tube since i cant link with my limited technology. We watched it and Steven was wheeled to the OR giggling.

Alisa and James left and I waited. After a few hours, Dr. Jones came out to tell me all had gone well. While in the surgery, he remembered thinking that he wished the bone had broken the other way and he decided to set it angling up in order to help Steven straighten out his leg and walk better. So basically he broke it the other way. Stevens bones are so weak from chemo and not bearing weight for so long. But that is another post.

I left the waiting room (where, incidentally, the receptionist remembers me) and into recovery. Steven was screaming until he got enough medicine to knock him out. He is finally claiming exclusive rights to the 10 on the pain scale. He is comfortable now, but is getting morphine every 2 hours. He was so sad when he heard we were staying overnight, but now he is scared he wont ever be able to get off the bed. Hopefully we have seen the worst. Luckily his cast is not over his pelvis, but it is still awfully high, understandably so. We got a jar with the screws and the plate. I can't believe how big they are. Steven keeps wailing things like, "why did this have to happen?!" and "Why did Dr. Jones do this to me?". I am sure we will make it through somehow. Time will tell. Thank heavens for pain meds, that is what I am saying tonight. I will try to update as things progress, but for now we are planning to go home tomorrow. He will be in a cast for 8 weeks.

Sunday, December 4, 2011

An update

So....I am super tired tonight--mostly emotionally. I can't even describe how discouraged and disheartened I've been about the leg break. Of course, you would think that I would be a little more sympathetic for the patient and a little less concerned about my own disappointment. He is in a lot of pain and is very sleepy. He didn't sleep well last night and between that and the pain medication, his eyes were drooping all day. He fell asleep in the recliner tonight.

It isn't fun to see him in pain, but I know that he will get over it, so my concerns are mostly centered on the future. You would think I would have learned not to count on the future too much. My life certainly hasn't turned out like I planned. During chemo, I got very good at living day to day and focusing on the present. Since he has finished chemo, I've been trying very hard to plan ahead and set goals. I know that the future is uncertain, but I have really centered my life on getting Steven walking again and putting our lives back together.

So now, this is a huge game changer. It is hard to know how this will work out. Will he be starting over? Or has he made some gains? I suppose only time will tell.

Dr. Jones called late last night. He had been at a conference all weekend with no cell phone coverage and called as soon as he got our message. How amazing is that? I'm telling you--he is an outstanding doctor and person. Anyone who knows him and hears that he is Steven's doctor says something positive about him.

But I digress. Dr. Jones will put a cast on Steven's leg on Tuesday. He hasn't seen the Xrays yet, but from what we told him, he thinks that Steven will be in some sort of cast or splint for at least six weeks, depending on how well it heals. He may be in a cast for only half that time and then move to a shorter cast or splint. Either way, he won't be bearing weight for that time and when he does, it will be very gradually. Because his bone hasn't been bearing weight for so long, it is not very strong and this is fairly common with limb reconstructions.

Common or not, it is still bad news. I really don't know how long we are looking until he is walking again. So much will depend on him and if he will do what he needs to do. Last as I was going to sleep, I literally couldn't stop crying. I couldn't figure out how to stop so I could go to sleep. I had been thinking about a woman I talked to whose son had a rotationplasty four or five years ago. He has had a rough road and even broke his foot at one point. Despite this, she told me that she was very pleased with the surgery and felt it was the right decision. I have been wanting to call her but I thought I lost her number. When I couldn't sleep I went looking for it and found it right away. Somehow just thinking that I can call her this week calmed me down and I was able to sleep (at least until Steven woke up with pain).

I think we will get through this. I am not sure how or what it is going to take, but what else can we do but keep trying? I have felt many times today like throwing my hands in the air and giving up. But that is pretty ridiculous if you think about it. We will do what we have been doing all year--taking each day one at a time, living with hope, and trying our best. I guess that is human nature and is what makes this world go around.

Saturday, December 3, 2011

When will he walk again?

Okay, here is a post I've been avoiding for a long time. And it includes something new that I really hate to tell you, but even more so, hate that it happened. If you want to read that, skip to the end.

The big question on everyones minds, including my own, is "When will he be walking?" This is a difficult question. The answer that we have recently heard is that once he trusts his leg a little more and will step down into it with his weight, we will see that he will progress very quickly.

So, why doesn't he bear more weight on his leg? Well, there is the physcological side of it--I've heard that often amputees have a hard time trusting thier prosthetic. Plus, since his surgery seven months ago, he hasn't born a whole lot of weight on his leg, so there is some serious atrophy of the muscles.

Also, you can tell by the pictures of his leg, he can't stand up straight on his leg. The rotationplasty leg is longer with the prosthetic. His prosthetist believes that this is necessary to get his foot stretched out more. There is a difference of opinion here. Steven's orthepedic doc thinks that he would get better faster if he could stand up straight on his leg, meaning that his foot would stick out a little in the back. Does this make sense to anyone?

I asked the prosthetist about that, and he said that eventually, that is what they will do, but his hope is that having the leg how it is now will help him get more stretch, which translates into a bigger range of motion.

This is all very confusing to explain. When I have him at therpy or I am speaking with the prosthetist, I understand most of what they are telling me. But I have a hard time even retelling it to Rob. This week I made Rob take him to the appointment because I wanted him to have a better understanding of what is going on.

So, then there is the question, "Why can't he walk?" Well, his muscles just aren't strong enough to totally hold him up. The good news is that he is making progress. He can't put a lot more wieght on a scale now with his prosthetic leg than ever. He can put almost 50 lbs on the scale, but he now weighs over 65 lbs, so he is still a little short. He will "walk" without crutches sometimes, but it is a very severe limp, and you have to wonder if his amputated leg is doing any of the work.

I think one reason he is taking so long to rehab has to do with his personality. He wants to be just as fast as all the other kids, or actually, faster. So he often just crutches along, lifting his foot totally up, to be able to hurry. The more he takes short-cuts like these, the longer it will be until he walks. It is very difficult for even a very bright 9 year old like Steven to wrap his mind around the idea of sacrificing some speed now to be walking sooner.

One of the ways that Steven does therpy is to play the wii fit. It has a balance board that can feel where his center of motion is and if he leans to one side or the other. It is really a brilliant therapy tool--he can tell that he is getting better because it gives him a score and even tracks the scores. Also, there are many games that encourage him to lean to either side or to balance in the center--like the snowball fight or the hula hoop. That way he can try to beat his old score and try harder.

So, my really sad story beings with the wii fit. He had done an intense morning of physical therapy and had moved onto the wii fit. At some point, Andrew (the little brother), nudged him with his foot (probably trying to prevent him from getting the high score) and tipped Steven off of the two inch balance board. Steven started screaming like crazy and the long story short is that his leg is broken.

Okay, so how embarssaing is that to break your leg playing the Nintendo? But beyond embarassing, this is going to be a huge setback for physical therapy. When will he walk? Suddenly I know that it won't be in the next month. Or maybe many after that.

This is upsetting in so many ways. I cry every time I think of it. Is he that fragile that a little upset like that will cause such a huge setback? Are his bones weak from so many months of underuse? How will he trust his leg now? What will his muscles do? This has been a fear of mine from the beginning. He has had several falls, none which resulted in breaks, but they still set him back a while. His last fall before this made me really consider the mechanics of it. I mean--think of how his prosthetic can act as a lever to cause some serious damage if he were to twist it. It makes me worried--wondering if this could happen again.

Rob spent half the day at the ER with Steven. What he has is a compression fracture inbetween two of the screws in his leg. The docs at the ER wrapped his leg in a splint and told us to give him pain medicationas and to see his orthopedic doc on Monday. We will have more answers whenever we see him--like when will he be able to put weight on his leg? I wish we could hear the answer to this one, "When will he be walking?"

Wednesday, November 30, 2011

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.

Friday, November 25, 2011

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



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

Thursday, November 24, 2011

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!

Sunday, November 20, 2011

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.

Sunday, November 13, 2011

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!

Saturday, November 12, 2011

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.

Tuesday, November 8, 2011

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!

Saturday, November 5, 2011

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!

Thursday, November 3, 2011

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!

Sunday, October 30, 2011

A Sunday update

Wow--it is crazy how much time can fly and I haven't blogged a thing! Not that life is all that exciting here, but I do have lots of little and big stories that I have been meaning to blog about--some of them for months. It is just like all the other things that have piled up in the last 9 months. I just don't have the time or energy to do it!

So many people ask me how Steven is doing, and I never quite know what they want to know. Physically? He's feeling great. He still has the runny nose that he has dealt with since chemo first started. I'm a little worried it will never go away. He is so much stronger and has much more endurance. His eyebrows and eyelashes are starting to grow in. That added to his pink color makes him look really good. He is still far away from walking. I will have to post more on that later, but he is making progress and it is coming along much faster now that he is off the chemo.

Sometimes I wonder if they are asking about the emotional side of it. I get the feeling they are hinting about the backwards foot. Well, he doesn't seem to care one bit about that. Every once in a while he will make a comment that reminds me that he is very aware that he is different, but those are few and far between and he doesn't let that hold him back from things. Not being able to walk and run with the other kids is the hardest thing emotionally for him, but that shouldn't be a permanent thing. With his new found energy, he is really finding ways to compensate anyway. The other day when I picked him up from school, he was so excited because he had blocked 3 goals in soccer. (Okay, so two were with his crutches, but still!)

I've had many moments where I just think "yes, my Steven is back." We only expect him to get better every day, so things are good. He will get his port out on Thursday and that will be the real end of all things chemo. We are excited for sure.

But even still, life is super busy. I guess that is normal with four little ones, but even more so since we are kind of picking up the pieces of our life. We have let so many things go in the last year. It is really overwhelming to try to figure out what is important and what we need to spend our time doing. For a month, I have had a goal to write a list of all the things I need to do, but even that seems too overwhelming and I haven't done it.

So, as inefficient as it is, I am taking each day one at a time and doing what is necessary to get by. That is how I've been living since this started and I've dreamt of the day when I could get a routine and move forward with things. But perhaps moving forward isn't really as important as I think it is. Maybe one of the lessons I'm supposed to learn from this is how to enjoy life no matter how many dishes are in the sink or how many papers are piled on the counter. I am getting better at that, so I guess I am making progress afterall!

Tuesday, October 25, 2011

Clean scans!

It's a happy day here--all of Steven's scans were clear. We had a long day that frankly just feels overwhelming to document. Here are all the appointments we had today: prosthetist, orthopedic surgeon, audiologist, nuclear medicine (bone scan), ct scan, xray, and hem/onc clinic. We started at 9 and finish around 4, with about an hour break for lunch. It was a big day full of questions and answers and worries. Happily, in the end we had good news that all is well for Steven. He will get his port out next week sometime and then get scanned every three months for a while. He was really worried about his audiogram, but he did pretty well. He definitely has hearing loss, but not enough to need hearing aides. That could still change, but we'll cross that bridge if we get there.

Monday, October 24, 2011

Random thoughts

Tomorrow is the big day of the scans and I am nervous. The chances of Steven having cancer after just finishing chemo seem to be almost impossible. But if it were impossible, the docs wouldn't scan him and expose him to more radiation, so clearly it could happen. It seems so unlikely, but if he did have cancer, it would be very bad. So maybe that is why I can't relax tonight.

Steven had a fabulous time in Yellowstone. I will post some pictures and details about that soon. The weather cooperated for the most part and so did the little kids. Steven had the most energy of all of us--not wanting to miss a thing. By the end, most of the kids were done with geysers, but not Steven--he was interested until the very end. He was happier than we had seen him since this started--totally in his element. I had to keep that in mind so that I could handle the trip--I was getting grumpy by the end. I had to remind myself that this was Steven's trip to make up for so many lost opportunities throughout the year and to celebrate life. And truly the beauty all around was such a glorious reminder of how wonderful it is to be alive.

This morning we went to the hospital bright and early for his first appointment of the week--this time with a dermatologist. When Steven lost his hair, we noticed a mole that looks a little funny and I decided that the first thing we would do when treatment is over is to get it off. I kind of expected to have to convince the doctor to take it off--I was prepared to be firm. But she didn't need to be talked into it--she gave me some good reasons to take it off and then said, "But I don't want you to worry about this--this is probably nothing." Oh boy! I wasn't worried until she said that! She told me that osteosarcoma patients have a higher risk for melanoma. Is that true? I've been looking on the internet and can't really find anything. Anyway, he will get it off sometime in the next few weeks--after his scans.

My sister has scans this week, too. The stress seems a little excessive--how did they get on the same scan schedule anyway? I know that lots of prayers are heading to heaven this week on our behalf. I just hope that God will see some families in desperate need of peace and health and time together. Is that too much to ask?

Wednesday, October 19, 2011

We're off

Steven's labs look great--his blood counts are all within normal ranges for the first time since he started chemo. It shouldn't surprise me so much--he really has seemed liked a whole different kid the last few days. So I guess the trip is on--and I won't even have to worry about things like altitude sickness or bleeding accidents--and likely not even fevers. Keep your fingers crossed that the worst of our problems will be kids that are tired of the car or cold--I think I can handle that.

Tuesday, October 18, 2011

Steven is feeling better every day--which is a huge relief. Last week I was pretty worried that cancer had taken away my sweet boy and left an ornery one in his place. You would think I would have remembered something I've learned over and over again as a parent of four kids--there is usually a good medical reason behind extreme crabbiness. I don't exactly know Steven's reason, but I do know he has had many reasons to not feel well.

At any rate, he is getting used to school and we are getting into some better routines to get his physical therapy done. His favorite new therapy tool is a wii fit. He has to stand on a board and try to balance his weight between both legs--much more fun than trying to make the needle on the scale go up.

I just took this picture. He loves the new hat I bought him him for our Yellowstone trip this weekend. That's right--we are going to attempt Yellowstone. I have some hesitations--like that the high is going to be in the 40s, for instance. But Steven is super excited and we are going to try if nothing else. We've been looking forward to this trip for over four months. I got nervous that chemo wouldn't be finished and would ruin our plans. I guess I should have been more worried about the weather.





Yesterday, we got to visit with my grandma. Steven hadn't seen her since he started his cancer treatments. It was so good to see her--there is nothing like my grandma to make me feel like things will be okay.


Friday, October 14, 2011

What's next?

This is by far the most frequently asked question around here, so I thought I would take a minute to answer it the best I can.

The next step for Steven is that he will have all the scans and tests he has ever had. They will check for any signs of cancer (heaven forbid--that would be bad news indeed, but it is very unlikely since he just finished his chemo treatments.) They check for that with a bone scan, an Xray and a CT scan. They will do an echocardiogram to test his heart function. As I've mentioned before, the Doxorubicin chemo he had can cause heart problems--immediately or years down the road. His heart function will be tested yearly for the rest of his life. He will also have his hearing tested and for the next few weeks will have his blood monitered through regular lab draws.

Once he passes all the cancer tests and his bone marrow has recovered (that is what they are checking with the blood draws), they will schedule a sugery for him to get his port removed. The scan will take place sometime the week of the 24th of October and the port sugery will likely be the week after.

For the next two years, Steven will have scans to check for cancer every three months. After that, it goes to every six months until 5 years from now. Then he will have scans annually for five more years. So it is ten more years until he is considered truly cured. When I think of that, I must admit I feel a little overwhelmed. Maybe by the end I will be a pro at not freaking out, we'll see. It is hard to envision going through ten winters where every cough will scare me to death. (The CT scan they do is of his chest, because with osteosarcoma usually metastisizes to the lungs first.)

So far, this week has been hard. Like I said before, he's been back at school almost full time. He has made a major improvement from Monday to today, so I am feeling hopeful. Next week is fall break, so he only has a few days of school and he'll miss more days the next week for doctors appointments and scans. My hope is that by the end of the month, he'll have more energy and be more like his old self. I'm remembering my kids starting school in the fall and how grumpy they can be for the first week or so and he has had a super long break from school that hasn't exactly been fun. Plus, he's got legitimate physical issues and emotional stuff to deal with. It is a lot for a kid and so keep praying for him--he's got a way to go.

Thursday, October 13, 2011

Party time

Life has come at me fast, that is for sure. I am trying to take it slow, but because I have put off so many things for so long, it is really hard to do. Steven has been at school all week, with the exception of a PT appointment. He seems totally exhausted. I can blog more about that later, but for now, here are some pictures from the party on Monday. (I only took a few and most were out of focus, oh well.)

It was a huge success--most of the kids in Steven's class came, many of them with their families. Rob and I both come from big families and most of our siblings and neices and nephews were there, plus many of our other friends came. There was no exact head count, but we went through 100 hamburgers and 120 hot dogs. It was great to see so many people come and support Steven. I only wish I could have visited longer with everyone!

Thanks to my awesome brother-in-law and his mom for grilling for almost two straight hours!


Here is Steven with a couple of friends from school.


Some friends of ours got him a trophy--he LOVES it! It has "Team Steven" at the top and "Chemo Cup of Courage" at the bottom.


Alton shaved his head to show his support for Steven. Now is hair growing contest time. Bring it on!


We had a really nice time and are so grateful to our families who put the party on for Steven. He has been awfully grumpy at home this week, and this was the one time we saw some real smiles all week. I hope the memory will shine even brighter for him. I know it will be a good one for me. I took the girls to the farm for a picnic today and we sat in the same pavillion--I felt loved just being there and remembering.

Sunday, October 9, 2011

Bell time!

Steven's last few days at the hospital were fairly eventful. He had lots of visitors--two of the visitors he had been looking forward to for a while. First of all, his cousin James had long wanted to skip a little school to come and "babysit" Steven in the hospital. On Friday he got his wish while Alisa and I headed off to do a bit of shopping.



On Friday night, my brother, Matt, came and had a sleep over and let Rob and I off the hook. They stayed up late playing board games and video games and eating pizza. My brother, Mike, showed up for the party, too. Steven was in heaven.



Saturday morning was a big day--DISCHARGE! First, the nurses all sang to him "Happy Last Chemo!"



Then it was time to ring the bell.





Steven rang it and truly it brought tears to our eyes. One of these days, if I can muster up the energy, I'll post the video of him ringing it.



Goodbye hospital! I know we will be back, but hopefully not for any more chemotherapy.

I have a lot on my mind as we finish this up. I got home yesterday and part of me wanted to crawl into bed and sleep until 2012. I feel like I have run an emotional marathon and now it is time to crash. On the other hand, part of me wanted to start cleaning out my drawers and cupboards and catching up on our budget. In the end, I did neither. I wandered around kind of aimlessly. In fact, our suitcases are still packed. Go figure.

I am very happy to be done, but also apprehensive about all that lies ahead. I think it would have been the most glorious day of my life if I knew for sure that we would never be back and we could just walk back into our old life. But in many ways, this is just the beginning of a journey on a whole new path. Steven has to learn how to walk and we all have to learn how to live with uncertainty.

But even with my hesitations, I can see how leaving the hospital is a really really good thing. Steven will feel so much better and that will help him make progress. Having our family together and back into some of our old routines is going to help us all, too. So it truly is a reason to celebrate!

(P.S. Speaking of celebrations, don't forget that everyone is invited to Wheeler Farm Monday night for a family night party. Dinner, games, and fun all provided. Come anytime between 5:30 and 7:30. We'd love to have anyone who wants to join us!)

Saturday, October 8, 2011

Home!

I'll post more later, but thought I'd give an update: Steven cleared his methotrexate this morning and we came home around lunchtime. Yipee!

Friday, October 7, 2011

Top 10 lists

Top 10 things I will not miss about the hospital:

10. The cafeteria smells, especially in the morning
9. The parent shower
8. Super frequent packing and unpacking
7. Constant hand sanitizing
6. The parent "bed"
5. Fear of hospital germs
4. Nurse interrupted nights
3. Hearing babies cry down the hall or code blues on the PA system
2. Being apart from the rest of my family
1. Watching Steven feel miserable

Top 10 things I will miss about going to the hospital:

10. The beautiful views from the windows
9. Housekeeping!
8. Lots of time to think or read or waste time on the internet
7. Unlimited pebbled ice
6. Room service!
5. Pastry deliveries from my dad
4. Meeting and visiting with parents who are in similar situations
3. Spending time with Steven, a captive audience
2. The feeling we are actively killing cancer cells
1. The wonderful doctors, nurses and staff that have taken care of Steven so well

Thursday, October 6, 2011

For Steven's last round of chemo, the pump says it all for me:



By chance did you hear my big sigh of relief coming from the hospital last night?

So far, Steven's last round of chemo has gone smoothly. Although he felt nauseated, he didn't even throw up this time around, which is unusual for him. We are feeling so happy that this is it for him. He'll be at the hospital until his blood clears the chemo, which will hopefully happen sometime Saturday.

Tuesday, October 4, 2011

One last time

At 4:00 this afternoon, I finally got Steven's lab results and confirmation that he is indeed going in tomorrow for round 18 of chemo--his very last round!

I spent the day motivating Steven to do homework and physical therapy, doing laundry and dishes, etc. I kept debating with myself about whether or not to pack. I have some sort of superstition that if I pack, he'll get delayed. So here it is, 10:30, and I still haven't packed. I started on my child care plans about an hour ago.

But just as I heard the great news, Andrew got home from school and it was pumpkin painting time. Someone left us a fun surprise on our doorstep last night including pumpkins for each of us and paint and although Laura wanted to paint them when she woke up, I made her wait until Drew came home from school. So instead of packing, we painted. And after that and dinner, we headed to the library.





I can hardly believe I am almost to the point where I can put the suitcases away and be done with the packing. We were talking about what the girls are doing this round during dinner and I mentioned sleeping over at grandma's. Steven thought that sounded like a lot of fun and Addie said, "When this is over, I don't want to have any more sleepovers without you, Mom."

Poor thing! We are all at our limits--physically and mentally. Being done will truly be a reason to celebrate.

Speaking of celebrations, we felt like the end of treatment was a pretty good reason to party and so our families are hosting one. Everyone's invited, bring your families--

Sunday, October 2, 2011

A cancer documentary

Some nights as I fall asleep, I think of all the blog posts that I haven't mustered the energy to write. I tell myself, one of these weeks, I'm going to do a marathon and catch up with all the things I need to write down, mostly for my own memories.

Here is a post I've been meaning to put up for a while now. Some of you may know that my family puts on a film festival every year around Labor day. Lots of the videos are funny, but our entry this year was not very humorous. We just had to do a cancer video--afterall, cancer is defining us these days. We decided to have the kids narrate a documentary of our year. We had over two hours of footage that we edited down to this. (And when I say we, I mean Rob.) It didn't turn out exactly as I had envisioned it--but here it is.

Thursday, September 29, 2011

Round 17: check

We were pleasantly surprised this morning that Steven had cleared his methotrexate--it was .08. However, his CBC revealed low counts--his ANC was 300 (it needs to be 500 to go to school) and his hematocrit was 24. We decided to give him a blood transfusion before we got checked out so that he could feel a little better this weekend. He had been complaining of dizziness and headaches. I am so grateful to all those who donate blood. If you can donate--do it! Our nurse told us that the ICS unit at Primary children's is the biggest consumer of blood products in all of Utah, Nevada and Idaho. The cancer kids need blood and plasma regularly. She was trying to assuage my fears about blood reactions and infections, but I took from it a renewed desire to give blood.

As he had his transfusion, we put together some candy grams for Tim and Eric--our amputee cancer buddies who will both finish their treatments this Saturday. We can just taste the finish and you could just feel Steven's excitement in the hospital this round. It was so fun to wish them luck and dream about the near future, when we'll be on our way.



I love how little Steven looks next to Eric. Eric's prosthetic is almost as big as Steven is!



The candy grams were Steven's second craft in the hospital--so crazy! How do you spend that many days in the hospital and not do any crafts? I will tell you that Steven is just not a person who is interested in arts and crafts. He does love candy, however, and I know it made him feel really good to do something nice for someone. I'm going to have to figure out something he can do for others--I've always known it, but today I was reminded about how service can really help you forget about your own problems.

It is so good to be home. We are looking forward to a quiet weekend. Although technically, Steven could go back in for chemo on Monday, he isn't going in until Wednesday because he has an appointment at Shriners that morning with his prosthetist. That should put our last day of chemo on Saturday or Sunday of next week. Hooray!

Wednesday, September 28, 2011

Siblings

So, things are going fairly well this round. Steven threw up only once that first day and was feeling better by yesterday afternoon. He is clearing a bit slower than he would six months ago, but not as slow as the last round. It is hard to say if he will tomorrow or Friday. He has been extra tired and waking him up at night has been really hard.

Yesterday, Andrew and Rob came up in the evening for a visit. The kids all love to visit the hospital. I think it has something to do with the lenient video gaming that goes on. That reminds me of a conversation I had with Andrew where I asked him if he thought Steven was really lucky to get all the extra privileges that come with cancer. He said, "No. I'd rather not have cancer and not get all that stuff." Now I'm going off on a tangent, but it made me think of when my sister was first diagnosed with cancer. I had spent way too much of my life feeling jealous of her, but suddenly all of my jealousy dissolved away and I haven't felt an ounce of envy since. I only feel love and hope when I think of her and any of my siblings, and occasionaly regret that I ever had negative emotions. I am annoyed it took cancer to bring that change of heart.



My sister brought the girls up to visit this morning. They were darling, but didn't want to leave me. I ended up bringing them home for a nap. They are still sleeping, but I couldn't relax. I feel so terribly divided when my kids are all split up. I decided to blog about the hospital since I'm not there. Go figure.



Steven is spending his time alternately reading a book and playing video games. He is determined to take advantage of his last few rounds of chemo and have a Mario marathon. He has kept his leg on much of the time he has been in the hospital. Yesterday I had to make him take it off an hour before bedtime. I couldn't figure out why he wanted it on--he mostly just sits around in the hospital. He said, "It just makes me feel more normal with it on." It made me cry.

Monday, September 26, 2011

Steven's nurse just started the chemo for round 17. This is methotrexate so the infusion lasts four hours and hopefully Steven will go home Thursday, if not, Friday. His counts weren't great, but they we good enough. He has watched a movie, read a book and just started some Mario Galaxy. The cat got out of the bag that i actually do know how to plug the wii in (he used to wait until Rob could bring it up.). Something about the hospital makes me feel instantly tired. This is probably those negative associations the nurses talk about. I am having a hard time keeping my eyes open. But life is good--even the docs are talking about how close we are to the end. Exciting!

Sunday, September 25, 2011

Life

We've had a great weekend, but it didn't turn out how we had planned. The boys were out of school on Friday. Steven got to go bowling with some friends from school. He had a great time and asked to do it again on Saturday. He would crutch out to the end of the lane while one of his friends carried the ball for him. He would trade a crutch for the ball and then try to throw it down the lane. It was fun to watch--so good to see him involved with his friends. One of his friends had chosen it for his birthday party just so that Steven would be able to participate. I won't deny that I had my doubts that he could do it, but I learned a lesson about letting Steven decide what he can do.

On Friday evening, my brother called with great news that his wife had gone into labor. My parents were out of town and I was the closest family around, so he asked if I could help him with his boys. We ended up watching them overnight at my parents house (if you've seen our little place, you can see that we don't have a lot of extra space). As we were bedding down kids, the phrase, "is it a case of life or death?" kept running though my mind. Life and death situations seem to change everything. In this case, it changed part of a day. But I was thinking about the last nine months and figured that we'd been living in a life or death state for a while now. Don't get me wrong--I'm not trying to sound like death is around the corner, but without treatment, Steven's cancer has a 0% survival rate. In that way, his treatments are life or death.

Being in this state of mind has really influenced how I live. I don't plan ahead well at all. I usually think about what is for dinner 15 minutes after I should have started preparing it. This leads to a lot of eating out and many runs to the local grocery store. I don't even plan very well for who will take care of my other kids. My friends and family have been amazingly patient with me as I call them the day before I need help to ask. I can't commit to anything. I hate breaking promises, so I try not to make any.

Steven's chemo schedule is my grand excuse. Even this weekend, I got a call from the hospital asking if I could bring him for chemo on Monday instead of Tuesday. One day doesn't seem like a big deal, but it has thrown me off a bit. I happily agreed, anxious to get this done. But even tonight, I don't know for sure if he will go. He had labs done this afternoon and I will learn the results in the morning, at which point I will know the plan. I won't even know until the morning of if we are off to the hospital. Can you see why my mind can't think ahead very far?

Back to life: my brother's baby was born Friday night. It really was a joy to focus on a "life" situation instead of a "death" one. He and his wife named the baby "Bradley Steven"--a shout out to Steven, whose cancer fight has coincided almost exactly to Bradley's gestation. I got to hold him yesterday and had so many feelings rush back to me of Steven's birth and the joy I felt when he entered this world. Our brush with death has increased my appreciation for the miraculous gift of life.

Wednesday, September 21, 2011

Lately

I'm not sure where to start today, but since it's been a few days I'll make an attempt.

Steven has been back at school this week. He finally got caught up with his homework and he is like a whole new kid with that weight lifted off his shoulders. The last few weeks have been very stressful for him and for me. Between chemo, homework, and physical therapy, he has had a lot of stress. Last week I made a tough call and canceled his piano lessons for a while. It wasn't tough as in, "Can he handle this?" because clearly he has enough on his plate. It was tough as in, "My kid has given up enough of normal--does he have to lose one more thing?" (Okay, granted, this is only sad to me, not him, but still.)

He has been wearing his leg a lot more. He is making some progress, but not a lot and not very fast. He figured out that he can jump on the trampoline with his leg on and without crutches, so he keeps begging Andrew to go and jump with him. When he walks with his leg, he uses crutches almost entirely. I don't think he is bearing much weight on his leg at all. In fact, if he's in a big hurry, his prosthetic foot doesn't even touch the ground. Hmmm.....

It is September, my very favorite time of year and the weather has been lovely. We are only weeks away from finishing chemo. Steven has been super blessed throughout it all to avoid so many possible complications. My kids are all happy. We have good health insurance. I have so many reasons to be happy, but somehow my fight against depression is getting harder as time goes by.

But I won't give up. I will keep running. I will keep praying. I will keep hoping and dreaming. I will even listen to my phone messages. . . Okay, that might be a stretch. But I will have Rob listen to them and then tell me what they say.

I thank you all for you've done for me and my family. You can never know just how much each action, big and little, has meant to us. I don't go a day without recognizing just how blessed we are to know so many loving and caring people. It truly does keep me going, so thank you!

Thursday, September 15, 2011

Last drop



I am thrilled to report tonight that Steven is officially done with Doxorubicin and we have only one kind of chemo left (though two rounds of it). This stuff is nasty. It has immediate side effects as well as possible long term after effects (like heart damage and, rarely, leukemia). It is derived from a soil fungus. If you want to know more, you can read about it here.

Luckily, given without the Cisplatin, Steven tolerated it very well. He was really quite happy at the hospital this time around--joking around and enjoying as much free time as I would let him. I have been the slave driving mother, trying to get him to do homework, but he is having a hard time concentrating. I guess I don't blame him. Seriously, when I am there, I get nothing productive done. (With the occasional exception of getting Steven to do a little homework or physical therapy.)

He had some fun visitors this time around and collected some fun books and games. One of Steven's favorite things about the hospital is when they bring the book cart around. People donate books and then the kids can just pick whichever they like. The one he picked today he loved: George Washington, Spymaster. I think he would recommend it.

He really was in good spirits. He even started refusing the nausea meds by the second day. Here he is with a blanket turban, getting excited to go home.



All in all, this was a memorable stay. I had mixed feelings about the last drop of doxo going into Steven. In one way I am thrilled--like I said, this stuff is serious. But on the other hand, I was hit by a new wave of fear, wondering if it was enough to do it's job. As we wind down, I am beginning to understand why people feel uneasy as they finish chemo. As horrible as it sounds, it feels like we are losing a security blanket.

As we wrap this up, I feel I will almost have to rely more on faith to get by than I have in the past months. Doing something gives us a sense of purpose and drive and without chemo treatments, I'm not sure how I will cope. Will we be able to move forward and forget about the threat that hangs over us? I know I can't live on that edge-of-the-cliff place forever and will have to move on, but, man, that seems hard.

Steven has a break for over a week now, and then he will have two consecutive weeks of Methotrexate and then we are done! Despite my mixed feelings, I really can hardly wait to finish these treatments up.

Tuesday, September 13, 2011

Ready for round 16

I swear I was just blogging about round 15, but here we are again, checked into the hospital. Steven is getting hydrated and once he is, he will start doxyrubicin--his final dose of that drug. I honestly didn't think he would make it here by today. But hIs counts looked great yesterday and he passed his echocardiogram. I still don't know the full results of that--I know his heart function has decreased but not enough that they are concerned.

Anyway, here we are--on the road to finishing this up! I have spent so much time wondering if and when this round would happen, that I really just can't believe we are here. Steven is working on a little homework, though he isn't happy about it. He didn't do much homework during his last round and had to finish it up when he got home, and was pretty sad about that, so we are trying a different approach this time.

He should feel pretty good for the duration of this infusion, which is for 48 hours once it starts. He is getting a flu shot as I type this--not so happy about it, but he just had it and it wasn't bad at all. They put the same lydocaine cream on his arm that we put on his port to numb it. Steven's doctor just brought in a group of doctors--maybe residents? that came to have a look at his leg. Who knows, maybe it is a once in a lifetime sight for some of these guys.

Better go. The nurse just popped her head in and told me that Steven is ready for chemo and it is here, so it should start around 3:00. The good thing about this one is that we know he will be done by Thursday afternoon now.

Saturday, September 10, 2011

Round 15



Round 15 is officially over and Steven is home at last after his longest hospital stay yet--Tuesday to Saturday. I can't complain because some of the other cancer treatments involve month long stays, but still...that is a lot of hospital time. And the daunting part of it is that we are scheduled to go back again on Tuesday for round 16. My little kids had lovely days with friends and family this week, but still they were super needy when I got them home last night. Sigh.

I said he had a fun day yesterday, and here are some pictures to prove it. He got to go to a hospital carnival where he met Swoop and Cosmo and got their autographs. One man taught him a little about flipping baseball cards and Steven, the collector, decided he would start collecting baseball cards. (He has never watched a professional baseball game in his life...)





After the carnival, Steven also got to have Cosmo and Swoop come and visit him in his room. He got a squirt gun at the carnival and had been shooting the nurses. The nurses sent the mascots in armed with sringes and they had a little water fight. Steven thought it was great fun.



During our time at the hospital this week, my cousin's, daughter, Mary Kate, was admitted for Guillian-Barre syndrome. She was there from Tuesday to Friday, so it was nice to visit with them a bit. Steven was happy to let me go visit them in their room--he had lots of books, movies and video games that he was happy to consume without me bugging him about homework and physical therapy. I am sorry that Mary Kate needed hospital time, but at least their stay was timed well for my selfish purposes! She seemed to do be doing well, but will have a lot of physical therapy ahead of her to be walking well again. Jill (my cousin) and I were thinking of our grandma who would worry so much about her great-grandkids and we counted 7 that had logged time at the children's hospital. We couldn't help but wonder what our grandma must be thinking from her place in heaven.



On Friday afternoon, I brought Andrew up after school to come and play the wii with Steven, which really cheered him up. We also got to go meet Tim, the boy who had a rotationplasty the week before Steven. Tim showed us his leg and we were both amazed at how well he was doing with it. Hopefully it will inspire Steven to keep up his physical therapy so he can progress better.

So that is the news from here. We all have plenty to do to get caught up and ready for Tuesday. There is a chance that the next round will be delayed. His ANC is at 600 right now and it needs to be 750 by Monday. We will be praying for counts. There are only three rounds left now and even though that is a comforting thought, as we wind down, there are a lot more possible problems as his bone marrow gets tired and the chemo starts to take its toll.