A busy day

Here is a short recap of the last 24 hours:

5:30 I take a call about a van for sale. I call Rob and tell him to buy it.
6:30 I call my brothers and dad for second opinion. I call Rob and tell him to drive it. Steven watches a movie.
7:30 Steven finishes his chemo infusion and wants to sleep. I decide to go with Rob to drive the van. My sweet neighbor comes and watches the sleeping kids.
8:30 We drive the van and start the buying process
9:30 We sign the paperwork at the dealership and head home.
10:30 I'm back at the hospital. Steven has a great night. No throwing up.
I'll spare you the nightime details. He wakes up every 2 hours or more to pee. But I did spend some time in the wee hours of the morning checking up on the royal wedding.
7:30 We walk down to radiology where he gets and MRI. I go jogging.
8:30 He is still in radiology, getting a CT scan. The nurse tells me "nuclear medicine" is coming to inject him for his bone scan. Nuclear medicine? Don't care for that name.
10:30 We get visits from the oncologists. He is ready to go to his bone scan
11:30 Back from bone scan, wanting to finish the movie he started.
12:30 A visit in the courtyard from Aunt Kari and cousin Tyler
1:30 Trying to finish movie, visits from pyscologist, social worker, hospital school coordinator and oncologist with scan results. Scans look good. The tumor has shrunken and there is some evidence on necrosis. Nothing new on the lungs or bones. Good news.
2:00 Movie finally finished. A visits from my Aunt Laurie and Uncle Barry. Visit from his school social worker. Uncle Barry gives him some Navajo treasures and teaches us about their healing traditions. This is the highlight of Steven's day, without a doubt.
3:00 Various phone calls to report scans and firm up car buying details and babysitting plans. He gets a methotrexate level drawn. The number is low-looking much better than last time, most likely we will go Sunday morning.

And now it is after 5 and I'm not sure how the last few hours were spent, but they certainly were. Email, phone calls, homework, Ipad. It has been busy, but things are looking really up today. Good news from the scan, new van coming, lots of support all around us.

Round 6,week 10--last chemo before surgery

I kind of feel like Bill Murray in Groundhogs Day right now. We are back in the hospital for our last round of chemo before Steven's surgery and we are in the same room we were last time doing the same chemo and watching the same cartoon. This time Steven is doing better and today the sun is shining. I hope this round goes better for him. Tomorrow while we are here, he will have an MRI (mostly to help plan the surgery), a CT scan to check his lungs (they don't usually see tumor growth during chemo, but just in case), and a bone scan (to make sure the cancer hasn't spread to other places). We will also visit with the surgeon and get a better understanding of what to expect. If you have any questions--ask them now!

Once again, Steven is getting methotrexate. I'm including some pictures from last time. He is still just getting hydrated right now, hopefully he can start the chemo in the next couple of hours.

Ready, set, go!

Steven went to school all day yesterday and he's back this morning. He may only go half the day because he doesn't know if he can handle the "unpleasant aromas" (his words) of the cafeteria.

After school, we met some of his cousins for an Easter egg hunt. There was a perfect break from the rain. Steven said it was the best hunt ever--his favorite part was that he got mostly coins instead of candy ("money is much more valuable than candy") and there were no limits of how many he could find. I loved this picture of them waiting for the "go."



Needless to say, with a full day of school and an egg hunt, he hit the pillow hard last night. But all in all, I think he's doing quite well.

A few weeks ago, a friend of mine from Columbus sent me this article that I loved. It's about a boy with a rotationplasty who plays baseball. I love these stories!

Easter thoughts

We're home! The doctors ordered another test for his methotrexate levels this afternoon because he was so close this morning and he passed! It seemed almost miraculous for a few reasons--one was that twice during our stay, the nurse forgot to turn his fluids on after accessing his line for something else. So three hours without fluids, plus the two hours of a blood transfusion and he still managed to get out of there. He was drinking water like a champ all morning to clear the chemo and his hard work paid off!

With Easter, I've been thinking a lot about the resurrection of Christ and really feeling more and more amazed at the wholeness of it all. That everyone will be resurrected and fully restored. This whole cancer thing and upcoming amputation has brought it even more into focus for me. I was reading my the Book of Mormon the other night in Alma 11:43-44 says,

"The spirit and the body shall be reunited again in its perfect form; both limb and joint shall be restored to its proper frame, even as we now are at this time. . .Now this restoration shall come to all, both old and young, both bond and free, both male and female, both the wicked and the righteous; and even there shall not so much as a hair of their heads be lost; but every thing shall be restored to its perfect frame. . . and be arraigned before the bar of Christ the Son, and God the Father, and the Holy Spirit, which is one Eternal God, to be judged according to their works, whether they be good or whether they be evil."

Limb, joint, hair!? I read it and felt it was meant for me and for Steven. It does help to know that this is all temporary and someday Christ will restore it all. But even still, it isn't an easy thing. I will think about the loss of his knee and get very choked up sometimes. Other times I am counting down the days until we can get that cancer out of his body and keep moving on. One afternoon, Steven and I obsessively watched YouTube videos of kids with a rotationplasty and we were feeling pumped. Look at what they can do! Look at how they are walking! Tonight I was talking about the surgery with him and he said, "Boy, I'm sure going to look different."

It looks like the surgery will likely take place on May 10, but I will keep you posted as the details become more clear. I'm not exactly sure how to prepare for such a life changing event. Ready or not, it will happen and somehow we will make it through.

A better 24

This morning Steven was sitting up in his hospital bed when I opened my eyes, "Hey Dad, can I play the ipad? ... And I'm starving! Can I have breakfast?"

Awake, alert, and appetite. All good signs this was to be a better day than yesterday. Later in the morning he downed two donuts.

His methotrexate levels this morning were low enough that he could have his first blood transfusion. That definitely helped bring a little life and color back into him too (though I think the donuts worked better :) ).

My favorite part of the day was when we made our trek out to the fresh air in the "courtyard" area of the hospital. Steven said to me as we walked down the hallways, toting his IV pod along, and wearing his breathing mask, "I haven't really seen any other sick kids here." This was a little surprising to me. We passed a few rooms with open doors, "Ah, now I have." he said, as if feeling a little more like he wasn't alone. Maybe we need to get out in the hallways more.

When we made it to the courtyard, there happened to be a nerf football lying there. We played catch for a while. Steven was his old self. We looked for life flight helicopters. When it got too cold we went back in.

My parents came to visit us later on, and his other Grandma is with him tonight.

The rest of the day was spent in good spirits. I'm hopeful his methotrexate levels will take a dive tomorrow.

I felt a bit guilty though as I left the hospital. I get to go, but he has to stay, perhaps two more nights. He's a trooper!

A rough 24

Rob is at the hospital with Steven tonight. Steven has had a rough go of this round. Last night he was throwing up worse than he ever had. This was supposed to be the easy chemo!!! What happened? Not only that, but he isn't clearing the methotrexate as fast as he has in the past. My Easter-at-home dreams are slipping away. I won't give up hope yet, who knows what the morning will bring?

I hope it brings a methotrexate level low enough that he can have a transfusion tomorrow. I suspect that his low red blood cell counts aren't helping our situation here. Maybe new blood can solve some problems. I tried to help him do homework this morning, but he had such a hard time concentrating, he was even crying. It broke my heart because he cries so rarely. So we stopped homework and I gave him the Ipad. Somehow he manages to concentrate on that.

And then there is me. I'm not a big crier either, but today has been rough. I can't go 20 minutes without breaking down into tears. It is so hard to see him suffer, and so hard to see other people suffer. It's going to be an Ambien night for sure--my mind is racing over statistics and treatments and the future and the present.

The highlight of my day was taking the girls to the hospital to see Steven. They loved seeing the place we always talk about--"at the hospital." They even got to see the life-flight helicopter land out Steven's window. As we were getting ice from the ice machine, Laura said, "The hospital is so so so fun." As she said this, a bald and sickly little girl about her age was pulled past her in a wagon. I don't think Laura saw, but the contrast just struck me and I cried, again. I don't think "fun" is the word I would use.

Update

We made it to the hospital and are doing fine. The chemo started around 5:30, which is good. It looks like Easter at home is a real possibility. The nurse practitioner considered starting with a blood tranfusion but that would have slowed us down quite a bit, so we decided that since he doesn't feel too sick, they will do the transfusion in a day or two, when his methotrexate levels are low. They will closely monitor his ph levels and give him sodium bicarbonate as a pill during the transfusion if they need to. That may not make sense to anyone, but there you have it. Oh, and the nurses were shocked that Steven hasn't had a transfusion yet and he is in week 9 of chemo. What does that mean? I'd like to take it as a little miracle, but my worrying self wonders if the chemo isn't killing the red blood cells enough, is it killing the cancer? The only answer they will give is that we have to wait for the biopsy.

In other news, we have been on a quest to help Steven gain weight so that the surgery recovery will be better. We try to get him any kind of food he can dream up. Mostly he wants homemade hamburgers (a result of the anemia?). Andrew said to me the other day--"when can we have something to eat besides chicken and hamburgers? We always have what Steven wants and I never get pasta!" We do eat too many hamburgers. He had one for lunch and dinner today and he has probably had 7 others this week. The diet seems to be working-he had gained some weight. I know it is working for me because I finish up the high calories shakes I make.

Portacath

Perhaps this is TMI, but I've had so many people ask me about Steven's port that I thought I'd put a picture up to satisfy the curiosity out there.



This is the way he gets his chemotherapy and all his blood draws. At the same time he was anesthetized for his biopsy, a surgeon placed it under his skin threaded the catheter into his artery. Before he ever gets poked, we put a cream on his skin at the port site to numb it, so as long as I remember to apply it, he doesn't feel anything. The cream needs to sit for about 30 minutes, and I admit that at first I was terrible about remembering so the home health nurse would show up and poke him without the port site being numb. He was a tough cookie and didn't complain, but once I remembered it and he decided it was so much nicer so now he faithfully reminds me about the cream.



In other news, he made counts today and so we are off to the hospital tomorrow afternoon for methotrexate. His red blood cell count was quite low, so they will check it again tomorrow and he will likely get a blood transfusion to bring the counts up. I never would have suspected it, though, he's been acting just fine. He did have a bit of a headache tonight.

If we get lucky, he'll get to come home Easter morning. I'm trying not to get my hopes up, but cross your fingers anyway!

A spring break

Here are a few pictures from our short trip. We had fun despite the rain. Best of all, my parents and sister came along.

On Sunday night, my cousin, Alison, came to visit with her family. Here her son, Eric, challenges Steven to a chess game.



We (I mean they) played lots of games.



We braved the rain for a little exploring. Andrew sounded like the little boy in Up, complaining about his feet hurting, etc.



We found lots of bright, interesting moss and we took lots of pictures of it.



We tracked a moose and luckily never found it.



Here is Kirsten, overcoming the no-tv-at-the-cabin situation. We normally don't need one in that beautiful place, but the rain was incessant!



The sun was up the next morning, but with it came runoff. The river was high and furious and water seemed to be dripping off all the trees and seeping out of the rocks. It's a good thing they have sand bags.



All said, it was a good trip. It was nice to be away from home, the kids loved it. I was even able to forget about the cancer a bit.

No escape

One of the hardest thing about this cancer thing is that I feel like I can't escape it. Even when we aren't at the hospital, when I'm not giving shots or pills, when the home health nurse is long gone, when Steven is at school--somehow all my thoughts come back to cancer.

It isn't because I'm not trying. I am sleeping pretty well. But in every dream, Steven has cancer. I pick up books to read, and every once in a while I can, especially if they talk about cancer. Movies are hard--I just can't sit still long enough. Today I helped the younger kids build and paint a house out of a furniture box. I enjoyed every minute of it, but I think I owe that to my newfound respect for life and how fleeting it can be.

I will keep trying. We just entered spring break in all it's glory here. Steven went to school today for the first time this week--I am glad he did so he can appreciate his time off. His ANC was good on Thursday (although his red blood cells and platelets were pretty low). We won't need labs again until Wednesday and then he's scheduled for another round of chemo Easter weekend, so hopefully we can sneak away for a night or two before then. And if we are lucky, we can sneak away from the cancer thoughts, too.

Rotationplasty

Cancer has brought all kinds of new decisions to our family. Little ones like, 'how much TV should a sick kid (or his well siblings) be allowed to watch' or 'should we get a dog?' Big ones like 'should we buy a house and/or a different car?' We are facing probably the biggest decision of all right now--'what kind of surgery should Steven have in order to re-sect the tumor?'

Cutting the tumor out is vital--without that his chance of survival plummets. The tumor is about the size of a tennis ball and it is in the top of his tibia, over the growth plate. The entire top of the tibia must be removed. There must be a wide enough margin to make sure all of the cancer is gone.

In the U.S., most patients with a tumor near their knee will choose to have limb salvage surgery by replacing the damaged bone with a metal prosthesis. It would be placed inside their leg, attached to the healthy bone. This is called an endoprosthesis. This is similar to a total knee replacement, but different because it involves replacing even more of the bone. The advantage of this surgery is that the leg looks normal. A couple of the disadvantages are that activity is limited in order to preserve the joint and there are often complications that arise from infection.

The limb salvage procedure becomes more complicated the younger the patient. The metal bone needs to be small enough to fit in his leg, but large enough that it can support a grown teenager. (The endoprosthetic usually needs to be replaced when the child is full-grown.) If it becomes infected and can't be controlled by antibiotics, then the leg would be amputated.

Another major obstacle in Steven's case is the location of the tumor. Because it is on his tibia, it makes the limb salvage more complicated and increases the chances that it will fail. If it were to succeed, he would end up with a weak leg because they would use some of his calf muscle on the front of the leg. The doctor thinks that in Steven's case, the chances of a successful limb salvage are between 25-50%.

And so, after a lot of research and prayer, we have decided on a form of amputation called "rotationplasty." It is hard to explain, so watch one or both of these videos and you will see what I am talking about:





You can see why we don't make this decision lightly. Although Steven isn't particulaly athletic, he is an average, active boy. Running and jumping are just part of the program. And who knows what he will be like 10 years from now? With a rotationplasty, he will have more choices.

And what does Steven think? He is sure that rotationplasty is the right choice. He made his decision based mainly on the conversations we've had with his surgeon. He says he doesn't care what people will think of him. I asked him why he wants to have rotationplasty and he said, "Well, first of all I will be able to do more things with the rotationplasty, and also I hate the hospital and don't want to have any more surgeries than I have to, and also because it is what the doctor recommends."

And so there you have it. The surgery isn't scheduled yet, but it should happen at the beginning of May if all goes well. He'll be in a cast for 6 weeks and then should be walking withing 3 to 6 months and hopefully back to normal activity within a year. As weird as it looks, it really is amazing that this is even possible. It is functionally preferred over a normal amputation because you have your own joint and a longer leg to operate the prosthesis. Also, the nerves are connected so you don't get the phantom nerve sensations associated with amputations.

The price of rotationplasty is that it looks strange. At best people will stare at him, at worst they will bully him. It will not be easy. He will have to relearn how to walk and then find the courage to be different. I hope he will push himself to new heights and find a strong sense of self as he overcomes this very difficult obstacle.

But any of these surgical options come at a price. And it is a price we are willing to pay to preserve his life.

If you want to learn more about rotationplasty, here are a few links we found that helped and inspired us in our research.

• www.rotationplasty.com
  
  
• Video of a boy who had rotationplasty
  
  
• "[The study] concludes that, for children younger than 10
  years old, rotationplasty should be a recommended alternative to tumor
  prosthesis due to the high risk of prosthesis-associated
  complications."
  Rotationplasty—a unique surgical procedure with a functional outcome
  
  
  
• A follow-up study of seventy rotationplasty patients
  

And back down again

For those interested in the labs--he got them drawn today and his ANC was down to 100 already. I seriously just can't believe how much they can drop. (By the way, I thought the last number was a misread and I had him read it to me three times.) His hematocrit or red blood cells are pretty low, too--borderline needing a transfusion. We'll see what happens Thursday. I will continue with the shots until at least then and hope that we really have seen the lowest. If the last round was any indication, he would be low on Thursday, too. In the meantime, Steven is feeling pretty lethargic and I am praying he doesn't get a fever!

Record numbers

The nurse practicioner called me with Steven's blood counts today and I was blown away with how high the white blood cell counts were. This is the effect of the nuepogen shots he is getting, but his ANC was 11,100. What? The normal range is between 1500 and 8000 and the "safe" number to go to school is 500. And then his white blood cell count was 12.5 (the normal range for that is 2.4-12.5, but the highest he's been since chemo started was 5.2). I'm happy that he responds to the nuepogen or G-CSF shots. But mostly I'm hoping that his tumor responds to the chemo and my limited knowledge of all this stresses me out! Is he not sick enough? The answer I normally get from doctors and nurses is, "It depends."

Time will tell exactly how the shots affect him. In the meantime, he is okay to go to school tomorrow and be about people on Saturday, but since Sunday and Monday would be when he would start the low period, he won't be at church Sunday or school Monday until we see what his labs say. The nurse told me to do shots until we see his next labs.

Steven really has done well with this round of chemo. He has thrown up only once, though certainly he is nauseated and his appetite has been very small. His red blood cells are kind of low, so he feels a little tired. But who knows? Maybe it is part of sitting around in his recliner so much. When the home health nurse came to draw labs today, he was on the couch instead of the chair and she was like, "Wow! I've never seen you out of your chair!"

It is rare for him to be out of his chair, but he does mix it up a little bit. Yesterday we went to the farm and he even rode his bike around. He found the geese and ducks hilarious.

Spotlight on Steven

I feel like I need to share a little bit about who Steven is. I know most of you who read this know Rob or me mostly and not our cancer star here. Since a picture says a thousand words, here is a link to a Picasa album with a few pictures and captions. (If you can't see it, let me know, we'll try something else.)

Steven

Doing well

Steven has done really well with this last round of chemotherapy. He came home Sunday evening and was begging to go to a family dinner, so I took him. He loved being around him cousins and other family, although even Grandma's great cooking couldn't entice him to eat. He does have some nausea, but so far he hasn't thrown up at all--at home or at the hospital.

We are having to give him shots of GMCSF every day. This is a drug that will help his white blood cell counts to recover faster. As I had never given a shot before, this has been a little dramatic. I won't go into details, it was kind of embarassing. But here is a hint--I had to stick him twice and I ended up getting sticking myself in the process. I did better today--maybe there is hope for me yet.

So far, so good for Steven. We got to the hospital Friday morning and didn't get the chemo started until 5:30 or so. I guess they need to hydrate him before they start, but I swear they could have started sooner. It felt like such a sad way to spend the beautiful day. We did finally figure out that there is a patio and so we spent some of the afternoon out there soaking in the sunshine. He ate a little breakfast this morning and so far he hasn't thrown up at all. If all goes well, we'll be home before bedtime on Sunday night.