Wednesday, June 29, 2011

Green Cast Club

Cross your fingers that the Green Cast Club will automatically dissolve tomorrow as Steven and his grandma are both getting the casts seen above removed. If all goes well, Steven will be cast free. (Grandma Jill, sadly, will have a few more weeks with a shorter cast.) Steven was supposed to start round 10 of chemo tomorrow, but the schedule up at the hospital is so full that they asked us to wait until Friday. I hate to get behind schedule, but another day at home (and one with perfect weather) is hard to pass up. For many reasons, lets hope that lots of sick kids get better and get to go home!

Sunday, June 26, 2011

Who is coming?

Ahh, Sunday. The weather couldn't have been more beautiful. Steven made it to a full day of church again this week and it really did lift his spirits. We spent a beautiful evening with my sister and her family and really, it couldn't have ended better.

Mostly, I'm wondering who is planning to walk with us on July 9th at Liberty Park for Cure Search? I am going to get some T-shirts made for our "Team Steven" and so I need a count and sizes (I will pay for them--someone is doing them for me at cost). The smallest is going to be a youth XS and I think they go up to 4XL adult. I know some of you are planning to walk but aren't registered, and I'm not sure if all of you who have registered are planning to walk. So send me an email ( or post a comment or call me. If you want to register, you can click here. I must say, though, that I am not too impressed with the website. If you register online, you have to pay with a credit card and set up a user name and password. I'm thinking it might be easier to register that morning.

Thanks to all of you who have donated and registered so far. We are making a pretty decent showing! I am hoping that this will be a really positive experience for Steven and that we can put together a good sized team to show him our support.

Saturday, June 25, 2011

A close call

We made it home tonight! It was a close call--a borderline number, but luckily they let us go. Here is a picture of Steven right after we got home. He was so happy to be here. I was so happy I cried the whole way home. I don't know if it was all happiness that brought the tears--probably a mix of happiness, sadness, stress and relief. I had a pretty long wish lists of things to do today, but considering we are working on the cancer cure, this is the number one priority. And now we are officially half way through chemo: 9 rounds down and 9 to go.

Thursday, June 23, 2011

A broken record

I went for a walk this morning before Steven woke up and I was trying to come up with a fresh way to report the news from the hospital today. I was unsuccessful! Maybe because of the interrupted sleep I got last night, or maybe because it is finally warm enough that even a morning walk was too warm for refreshing thoughts. But anyway, you can look at all my Methotrexate posts and know that history is repeating itself. If all goes well, we will get to go home on Saturday. Andrew is at swimming lessons right now with his cousins, the girls are probably playing at the park with one of their aunties. Rob got home from Canada last night and is back at work. And Steven is hogging the IPad because he doesn't feel well yet and our DVD player in our room isn't working. He's watching episode after episode of Phineas and Ferb on Netflix. Not exactly how I'd envisions summer of 2011, but hey! We do what we need to to survive, right? I've used the word "survive" so flippantly before, but now this is the real thing. Survival. Anyway, I am so thankful to all those involved in making this bearable for my kids and for me. You are all the best!

Sunday, June 19, 2011

"You are awesome"

It has been a wonderful Father's Day (even though I had to leave half way through the day for work). The kids all gave me drawings, or cards, or books--Andrew wrote a whole book in school about me ("I like my dad because he plays games with me," was one drawing). Sonja brought me gourmet breakfast in bed. Later, I had to pry Laura's arms off my neck because she wouldn't let go of a giving me a big hug.

Steven's card to me said, "You are awesome!" And I thought, no, you are awesome! I think of how draining this illness has been on each of us, but that pales in comparison to how it has been on him. He's had to take a lot. And will continue to have to take a lot. He is awesome, and the greatest Father's Day gift is that I still get to be his dad. What a privilege it is to know him, talk to him, and learn from him.

Friday, June 17, 2011

A small miracle

Remember my last post when I said it would take a small miracle for Steven to come home today? Well, we are home! In order for Steven to leave after this chemo, his methotrexate level needs to be at .10. On Thursday morning it was 1.11 and the doctor expected it to be .50 Friday morning. Well, his morning labs came in at .11! So close that they might have even sent us home that morning, but the doctor was so surprised that she was concerned the lab had made a mistake and ordered another test in the afternoon just to be safe. It came back at .08 and we were free! Steven and I were both elated and practically flew out the door.

Eight rounds of chemo done--10 more to go.

Thursday, June 16, 2011


I feel like I was unfair to the nutritionist in my last post--thanks for your comments to back me up. You help me realize that I have a whole army of people on my side. I admit that I was an emotional wreck last night, but I certainly stand my ground that I am trying my best. I also know she was just doing her job and trying her best, too. I guess that is what we are all doing.

And as far as Steven goes, he is trying his best to get out of the hospital. Unfortunately, barring a small miracle, he won't get out until Saturday at the earliest. For some reason, the methotrexate is clearing more slowly this round than it ever has. I have a theory that it has to do with his red blood cell count, but even if my no-medical-background reasoning is right, I have no control over that. He is doing his best to drink and even left his room a little today, hoping that moving around would do the trick. The doctor told him that there wasn't much he could really do to control it either. And so we wait.

He has been eating well and acting like himself. He is taking advantage of his hospital privileges and playing video games practically around the clock. I brought a very optimistic pile of books to the hospital this round because lately he has been a reading champ, but they are sitting there unread.

Sitting around watching my son simultaneously being infused with a poison and playing video games nonstop seems like a twisted kind of torture for me. Today Rob's mom was kind enough to give me a break and I came home and laid down on my bed and instantly felt like I would have the strength to do this again tomorrow. And then I felt guilty for complaining because Steven is the one who is truly stuck. I get to come and go at will and I have two legs to take me there and no IV tower to drag along. I don't have to wear a mask to leave the room, either. And mostly, I'm not the one with cancer.

Wednesday, June 15, 2011


So a nutritionist came in today and is worried about Steven's weight. This is a long story but you can imagine that we are having a hard time keeping his weight up. The nausea with the cisplatin lasts a long time and he has basically gone on strike agaainst hospital food. Then when he has mouth sores, he eats very little. I have been feeling good about his weight this week and was sure he would have at least maintained it from a few weeks ago. Last week he ate things like a full lasagna dinner with French bread and then two servings of brownie with ice cream and homemade fudge sauce or sausage and a waffle and whole milk for breakfast. I make him a smoothie everyday with ice cream, fruit, full fat yogurt, whole milk and carnation instant breakfast. Granted, he won't usually finish the smoothie, but I do try. A very big problem is that chemo is killing his taste for some of his favorite foods like peanut butter and hamburgers. I am certainly trying, but maybe I've relaxed a little too much.

Maybe that is why I felt a little offended when the nutritionist asked me what was going on and if I knew about calorie packing. Steven tried to take a stand. When she brought up his weight loss he said, "Well, I did just lose a big part of my knee, that must have been some of my weight.". She countered with the weight of the cast, and he couldn't argue that one. We talked about some ideas and she asked me if he liked bagels. He did, but who knows now. Let me tell you a story about last night to prove that I will go to great lengths to feed my child.

At 4.30 yesterday, he was still getting hydrated before chemo started and he was hungry. All he wanted was a blueberry bagel and he refused to eat one from the hospital. I looked up Einstiens and drove to it. I got there at 5:05. It was closed. A customer on the patio thought the one by the university might be open longer, so I headed there. It was closed too. I was now in 5:00 traffic looking for a bagel. I went to a bakery and they were all out. I spent $10 on other things to try to tempt him. I headed back to the hospital and decided to buy a bagel from the hospital cafeteria just in case. Guess which one he ate? The hospital bagel. That was at 6:00 and by 8:00 he was barfing the bagel. Now we have strengthened his hospital food association and possibly ruined bagels for him. And I feel like crying just thinking about the whole thing.

And I have got to go hunt down a Wendy's 10 peice chicken nugget for him now. You may argue that I am spoiling him and maybe I am. But at least I can look the nutritionist in the eye and honestly say I am doing my very best.

Tuesday, June 14, 2011

Used to it?

Here we are, back at the hospital for chemo. They started the methotrexate around 6:30pm and if all goes well we will be home by Friday. He has already lost his dinner, but if we are lucky that will be the last of it. We have tried to make the most of his break (chemo will be a few days a week for the next three weeks). Steven has been plowing through a big pile of books. We spent Saturday in the canyon. Steven crutched around exploring a bit--even up and down hills looking at a beaver dam we found. He is getting to be unstoppable on his crutches. He's also got hopping down to an art. His little cousin was hopping around copying him-so cute. My favorite Steven quote of the week--"Mom, do you think my Field Guide to Yellowstone's Geysers, Hot Springs, and Fumaroles came in the mail today?" lucky for him it did. Steven also made it to most of church on Sunday. He thinks he might go to all of it next week. He is pretty self conscious about little kids and their gaping mouths when they see his leg. I would say he is getting used to the stares, though. I guess you could say we are all getting used to all of this. Sort of.

Wednesday, June 8, 2011

Summer break

Day four of summer break, and so far so good. We've floated stick boats in a stream, been to the zoo, eaten popsicles, visited the library twice, and attended a graduation party among other things. Summer is great, but it always takes a great deal of energy and self-discipline on my part to limit my kids' screen time. This summer that is more true than it ever has been. Not only do we have more screens to watch and games to play, but with one less leg around here--going places and even doing things around the house is a whole new ballgame. Sometimes I win my personal battle with the screen--other days I don't. And then I have one more thing to worry about. How else can cancer stress me out?

Steven's counts dipped down (probably his low was over the weekend), but his white blood count and ANC were up today to a normal range. We've been doing neupogen shots and really, that stuff is a miracle in a syringe. He's been getting more and more upset about them every day, but I keep reminding him how they have saved him from a neutropenic fever twice now. His hematocrit was low and his platelets are currently too low to start another round of chemo. But round eight of chemo doesn't start until Tuesday, and the docs feel confident that he will make counts by then.

In the meantime, we've seen evidence of the dropping counts. Last weekend he got a few mouthsores and the other day he had a nose bleed. He's been kind of tired--which I think the low red counts explain pretty well. He will go from seeming totally normal one day and the next day feeling lightheaded and then we'll do labs and the mystery is solved. Maybe by the end of this, his lab results will stop surprising me.

In other news, the CureSearch plans are moving along. Thanks to Rob's amazing company and co-workers we have totally surpassed my fundraising goal. As cool as that is, the more the merrier. We still need walkers, too. I guess this is the first CureSearch walk in Salt Lake. From the bit of research I've done on CureSearch, I am really impressed by what I've read. They truly are making a difference with the money they raise. There is an interesting article in that you can read here. The article talks about the excessive amounts of cancer non-profits and how some are poorly run and not making much difference in research. CureSearch uses over 95% of the money earned for research--you can check it out at Charity Navigator. We'd love to have any of join us July 9th! Go to Team Steven to register to walk or to donate. Thanks to all who have donated so far!

Sunday, June 5, 2011


This evening we asked our kids what they would like to do this summer. Last year we did this--a checklist of all the fun places we wanted to go and things we wanted to do. We each took turns giving an idea. Laura and Addie had some big ambitions--they added things like "play in the sprinklers" and "play with Emma." Andrew was thinking bigger. He wants to do fireworks and go on Grandma B's boat. Steven wants to tour the copper mine and get a dog. (He's spent hours researching dogs breeds and searching the classifieds. I am all for the idea of a dog, it is the actual adoption that is making me nervous!)

Rob and I both had some ideas. The list we came up with is very long--maybe a little ambitious for a summer filled with chemo. One thing that I told them all about was the CureSearch Walk--a walk at Liberty Park to raise money for cancer research. Steven thought that sounded like a great idea, so we are going to do it!

I just set up a team--Team Steven. We would love to have any of you come and join us on Saturday, July 9th at Liberty park for the CureSearch walk. It costs $10 to join the team--kids walk for free. You can also be a virtual team member and just donate. You can read about CureSearch's financial responsibility here.

It is going to help to have some fun things to look forward to this summer, and I think this walk will be one of those. Join us if you can!

Saturday, June 4, 2011

A yard game

I haven't posted in a few days--sorry if anyone is following us closely enough to wonder what is up. Friday was the last week of school and it's been a busy week. Add busy to my state of emotional exhaustion and then I'm sure you can see why blogging is on the end of my priority list. But here is a try....

Steven is doing well. He made it to school on Friday for an hour to sign autographs. He was nervous to go, but he had a good time. He has been feeling better this week--the nausea has worn off. Last night we went to Rob's parent's house for Grandpa's 65th birthday party. Here are some picture of him playing croquet with some cousins. He can get pretty frustrated with his one leg handicap sometimes--especially when it keeps him from playing with the other kids. Even though croquet was a challenge, it was the first time since his surgery that he played a physical game with other kids (unless you count Mario Cart as physical, I guess :)).