Sunday, July 31, 2011

I'm not sure why blogging seems like such a drag these days, but it does, so you'll have to forgive me for not keeping it up better. Life goes fast with four kids at home all day. Even my normally quiet hospital days have been more busy. Excuses, excuses. Really, it just takes a lot of energy to write anything very meaningful, so I haven't. I will try to come up with something soon.

But so you know, Steven did make it home from the hospital on Saturday morning. We were all really happy--especially because it had taken them so long to get the chemo going. Saturday morning was the earliest he could have gone home regardless, so I have no hard feelings for the pharmasist who made us wait 4 hours for the chemo on Wednesday. After the hospital, he stopped off at home to change into his swimming suit and headed to a birthday party. He did great, even though he didn't know many of the kids there. He went swimming at a public pool and really did well. He did slip on the wet tile with his crutches, but everything looks okay. We have learned that with crutches at the pool he needs to take extra care, or even not use them. You would think that we would have learned this lesson, really. Oh well.

I will keep you posted. He is due for another round of methotrexate on Thursday.

Friday, July 29, 2011

Steven has been hanging out in the hospital since Wednesday morning. He went through a tortuous methotrexate infusion on Wednesday evening (read: he was throwing up more than usual). He was feeling better by the next day and has been eating pretty well since. He has been busy up at the hospital with physical therapy, a long visit with the nutritionist, playing chess with some of the child life volunteers, playing games with his uncle, doctors stopping in, pet therapists (his favorite), a walk to the patio, video games, movies and books. Hopefully he will get to come home sometime tomorrow, but it may be Sunday--who knows. Rob is up there tonight--a nice break from me, I'm sure.

Tuesday, July 26, 2011


We've had a weekend full of fun--the movies, swimming, fireworks, and waterfights. The swimming was especially fun--Steven was just in heaven. He hasn't been swimming since this all started in February. He says that it was a little tricky to get used to, but after a while, it felt great. I loved it because he could play with the other kids without any kind of handicap. He has been feeling really good. Rob is feeling great, as well. We are gearing up for tomorrow and round 11 of chemo. We've had such a long break this time around that it feels really strange to be packing up again.

Friday, July 22, 2011

We've had a great week. There were butterflies and wildflowers everywhere in the canyon--beautiful. Steven felt lots better this week after his blood transfusion. He got to go shooting with grandpa and we did a hike around Tony Grove lake. He was a pro on his crutches and went most of the mile on foot (literally), but as it was getting dark, I made him hop aboard for a piggy back ride at the end. He is so light! We are newly committed to weight gain this weekend. Too bad the rest of the family can't put the pounds on for him.

His platelets have come up, so he is ready for chemo. Unfortunately, they don't have room for him on the schedule until Wednesday, but I guess that gives us more time to work on fattening him up. I finally took him in for the xray of his foot today to see if it was broken, but it wasn't. Hooray! We only have a few more weeks until they fit him for a prosthesis, so we have to really get working on his physical therapy.

Luckily, he is in good spirits and is willing to do things he doesn't love, like eat and physical therapy. Rob is feeling much better, too, although we still aren't sure what was wrong. He had an ultrasound yesterday and everything looked normal. We don't know what the next step is, but as long as he is okay, it doesn't matter so much.

Tuesday, July 19, 2011

Almost normal

Steven and Sonja spent the morning at the hospital getting a blood transfusion. He is a lot pinker now with the new red blood cells. They gave him red blood cells, but not platelets. The reasoning there was because he had no bad symptoms from his low platelet counts, and that if they recovered on their own, it would be all the better for him. (Though I'm not sure why the same reasoning for the self-recovery of the red blood cells didn't apply to them and they went ahead with that transfusion... Hmmm, don't think too hard, I probably missed something). ;-)

After that, Sonja took Steven and the kids on a minivacation. Steven desperately wanted to visit his grandparent's cabin. I'm sure they'll have fun.

As far as my health goes, I'm feeling much better this week than last. I got some blood test results back and it wasn't hepatitus, thankfully. Still, something was/is affecting my liver as the tests show, but I think it's on the mend. Little did I know that recovering from a liver infection could take so long. It's not like a flu or cold virus. I wish it were just that. But, thankfully, I'm almost normal again.

Monday, July 18, 2011


I just got Steven's lab results for the day: his platelets and hematocrit are even lower then they were Thursday. Platelets are now 13 and hematocrit (red blood cells) are 22.8. He is going to get a transfusion tomorrow up at the clinic. I have tried to prep myself for scheduling delays from the very beginning when every answer to my questions started with "It depends...", but we have been so lucky to stay on schedule that this first delay is a bummer. On the bright side, we can fit in a lot of fun in a week--especially a week where he feels good.

P.S. The reason the delay is for at least a week is because they will not start chemo until they can tell Steven's body is making his own platelets--donor platelets don't count.

Sunday, July 17, 2011


This has been a particularly trying week with all the worry. So far we have all survived, and even got to celebrate my sister's clean scans. But Rob is still not feeling well. We only have partial lab results so far and it looks like he's got something going on in his liver. Hepatitis maybe? Hopefully we'll know for sure soon.

Having Rob down for a while helps me realize how much I rely upon him. It hasn't been easy to hold down the fort solo, and adding the extra worry hasn't helped. Let's just say that my lack of compassion has pretty much disqualified me for the wife of the year award!

I have tried. At one point when I felt like lashing out at something or someone, the thought came to my mind that how I act under trying circumstances will really show my true character. It was a scary thought, and made me reconsider my anger.

I've thought a lot about endurance this week. We are just over half way done with the chemo and the adrenaline that got us through the first of it all is long gone. While we have become accustomed to the cancer routine and have even gotten over some of the initial fear, keeping up with the pace of chemotherapy has been tough. The emotions that come along with cancer are draining. I feel like I am halfway through a marathon that I haven't trained for and wanting to quit. Because I'm not really a runner, the only way I can make this metaphor work is to have a lion chasing me, because otherwise, I'd be done!

But I keep going, partially because there is no other option. But partially thanks to all the people who lift me up and cheer me on. And partially thanks to hope which gives me fresh new days. And mostly thanks to God for all the moments big and small where He reminds me that He knows and loves me and carries me when the burden feels too great.

Saturday, July 16, 2011

My computer is down, so this will be short. Steven is doing okay. His labs showed low numbers across the board, most concerning were platelets. He was at 15 and they normally give plasma when that number is below 20. Since he is having no bleeding problems and we expect them to be on the way up, we are going to wait on the transfusion. His mouth sores are mostly gone this morning which means his immune system is back. Celebrate that we avoided a neutropenic fever yet again! He is off fishing with his dad and grandpa. His numbers put a serious damper on our weekend plans so we found an activity just as exciting to make up for the disappointment. I promise I will post pictures soon.

Wednesday, July 13, 2011

Lego marathon

As soon as I get a chance, I will get pictures to prove this, but my boys spent most of the day building LEGOs again today. Finally, around 4pm, they emerged from their room for a little break. They both moved onto their other favorite pastimes: Steven read a book and Andrew teased his sisters. Rob was back at work today, but still not feeling 100%. No lab results for him yet. Tomorrow Steven is due for labs again and I will be shocked if he doesn't need a blood transfusion. I've never seen his so lethargic. He was in a good mood, just very quiet and still. As I was putting him to bed tonight, I took his temp and it was up just over 99. It may be nothing, but his counts are low now, so it is a big possibility. Hopefully I won't be writing from the hospital tomorrow. I kind of feel like I'm in stress limbo right now--nothing concrete to really get me scared, but lots of worrisome possibilities to keep me on edge.

LEGOs are not my favorite things, but today I felt like I needed to spend as much time as I could with the boys. I helped them sort and find pieces and tried to clean a little to find some lost LEGO pieces. It was so nice to spend some time with them, and I don't even mind that it is 10:00 and my kitchen is trashed. They were darling. At one point I made some comment about everyone seemed to be sick around here. Andrew said, "Well only Dad and me are sick--that isn't even half of us!" Steven and I exchanged smiles--it was just kind of funny that Andrew doesn't see Steven as sick.

Tuesday, July 12, 2011

Whew, I'm tired tonight. It's been a stressful few days, no energy for blogging. Rob hasn't been well. He went to the doctor today and we are waiting for blood results and hoping he just has a nasty virus. Although a virus isn't so welcome in the house right now because Steven's counts so low, at least a virus would have an end. We are really hoping whatever stomach problems he is having aren't more serious. My personal take is that whatever he has is somehow a result of stress, heaven knows we've had enough of that. He was a bit better tonight, we crossing our fingers for a better tomorrow. I'm not a stellar single mom.

And maybe that has something to do with stress, too. We've been on edge all weekend, waiting to hear my sister's scan results and today she found out that there is an area of concern, but they aren't sure. So more tests and more waiting.

I am still worried that Steven has a broken foot. He doesn't complain of any pain and everything looks fine, it's just that he can't do some of his physical therapy without extreme pain. Whatever it is must be minor, and we will probably get xrays, but his doctor said to wait and I'm all for that plan. That thing that concerns me most is that it will delay getting his prosthetic.

Today the boys spent the day sorting their LEGOs and building some models. We normally keep all of our thousands of LEGOs in a big bin all mixed up, so this is a major undertaking. It was a dream come true for Andrew who has an endless attention span for LEGOs and brother who doesn't have the same obsession. But obsession took over Steven and he has only left his room for bathroom breaks, food, physical therapy and piano. I heard him at 7am calling for Andrew, "Drew, come on and lets get started building!" They've made over 10 models, including the X-wing. Pretty impressive.

Sunday, July 10, 2011

Walk Day

Sometimes when people ask me what they can do to help, I feel like saying, "Not much unless you have a cure." It sounds so obnoxious, but I guess what I really mean is that so much of what we are dealing with is just part of the package. Don't misunderstand me--no kindness shown to us has gone unappreciated. In fact, people have done little things that come at just the right time and big things that boggle my mind. All of it lifts us, comforts us and even helps us deal with the hard stuff that is inevitable with cancer.

But yesterday, I felt like my request for a cure was answered--at least the next best thing. Over 100 people came to the CureSearch walk to be a part of Team Steven. Our team raised over $3500 and as a whole, the Salt Lake City walk raised over $72,000!

We had a wide representation of supporters on the walk: parents, siblings, cousins, neices and nephews, friends from the boys' current and former schools, friends from church, friends from high school, and even friends we made in Ohio. Of course, that doesn't include those that donated and couldn't make it. On that side we had relatives, neighbors, friends of friends, friends that go back to kindergarten and so on. Rob's company and coworkers were espcially generous. Thank you DIRTT!

I got my wish for Steven to be able to look around and see lots of people there just for him. Thanks to Rob's great sister, Julie, for designing the awesome shirts and her generous neighbor, Kam Weihing, for printing them at cost.

Steven missed the memo that this was a walk and not a race, so he insisted that we push his wheelchair at the very front of the race, behind the banner. Um.. ..we may have had some Team Steven line cutting, too. Sorry fellow cancer cuties!

All in all we had a wonderful time and will have to make this an annual tradition. My only regret from the morning is that I didn't have enough time to visit much with everyone who came. Please know that we love you all and really appreciate your love and support.

P.S. These pictures are public on the web and normally I'm kind of strict about putting pictures of others up without permission. Please let me know if you would like your picture removed--I'm happy to do it.

Friday, July 8, 2011

A birthday, the zoo and an accident

I'm totally worn out tonight, but thought I'd post a few pictures. Today was Laura's third birthday--three! It's my favorite age. She chose a zoo trip for birthday fun and fun it was. Lucky for us some cousins and grandma were going too. He really wanted to try the digger--so much that he ignored the crowd of people that was gathering, staring at his leg. We arrived before the crowds gathered, but it was busy by the time we left and on the way out he told me, "I'm going to put my hat like this (over his eyes) so that I don't see people staring at me."

We got home and went right to work on a birthday cake for Laura. My sister came over to help out (read: make the cake) and Steven was so excited to be a part of that. Then disaster struck--his crutch slipped on a spot of water on the floor and he fell on his rotationplasty foot. He was crying and more pain than I've ever seen him and I was sure it was broken. (Actually, I still worried it is broken.) He as been taking it easy all night, and is doing okay, but is still in some pain. I talked to his doctor and between the three of us, we decided to try to make it through the weekend and see how he is on Monday. Most likely he will be getting xrays next week. Please pray that it isn't broken!

Even still, Steven is excited about CureSearch tomorrow. He got pumped about the shirts that came tonight and he looked at the fundraising web page--blown away (as am I) that so many people are donating and coming to the walk. Because I never put a deadline on the shirt order, I have had several people tell me after I placed the order that they are coming. I ordered some extras, but there is a chance there wont be quite enough to go around. Sorry about the goof! We will do a first come, first serve thing and hope that most everyone will get a shirt. We can't wait to see so many friends and family tomorrow and know the rest of you are with us in spirit.

Thursday, July 7, 2011

CureSearch info

As I've mentioned before, the CureSerach walk is coming up this Saturday, July 9th. It is at Liberty Park in Salt Lake City. We have had such an amazing response--thanks to all! I have ordered 77 T-shirts and I'm a little worried we won't have enough--that is a lot of people! Last I checked we were just dollars away from raising $2500. Thanks to all who have or will donate!

If you have registered to walk, you may be getting email from CureSearch to explain the day, but for those of you who are registering the morning of, here is what I know about the walk:

Parking may be tricky. If parking at the park is full, you can park on a side street or there is an LDS church on Harvard Ave. which has some parking. There are also several bus routes that go past the park if you'd rather take a bus.

There is a parking lot kind of in the middle of the park, but more northeast than anything. That is where the fun begins. Registration starts at 8:00am. There will be food, clowns, face painting before the walk. I will be there with the Team Steven shirts so look for us. I believe the shirts are turquoise (I haven't seen them yet). If you have already registered online, you don't need to check in unless you have raised $100+ (then you can get a CureSearch Tshirt, not to be confused with Team Steven shirts). No matter how much you donate/raise, you can go and pick up a bandana for your whole party, including dogs. The bandana color represents if you are walking for a survivor or fighter or in memory of a child. There will also be a table for those who register that morning.

At 9:00am they will have the opening ceremony where they will talk a bit about CureSearch. They will have the kids who are currently fighting cancer come and introduce themselves and they will get a medal. Steven should be there--hopefully he'll be willing to introduce himself! Then the survivors will come up for a picture and then they will release balloons for kids who have lost their fight to cancer.

After that the walk will begin. It will be about 1.5 miles--around all of Liberty Park. You can bring strollers, I'm sure you can jog if you'd rather. There is a short version of the walk if the whole thing is too long. If you haven't been to Liberty Park, the playground has a splash park and is a lot of fun if you have extra time to play.

When the walk is over, they will have a closing ceremony and announce the top fundraising teams. So far we are number five. Go Team Steven! It won't hurt our feelings if you take off directly after the walk--I know it is a busy Saturday, and I am just amazed that you would come out and support us. And here is the link one more time if you'd like to register as a virtual walker or donate: CureSearch. Thanks again!

Monday, July 4, 2011

Goodbye Cisplatin

And good ridance! On Saturday, Steven got his last dose of Cisplatin. This is the nasty stuff that is damaging his hearing and gives him prolonged nausea. The protocol for osteosarcoma is for four doses and he finished them all. Hooray! He got to come home Sunday night and is so pumped about the fireworks. He is actually taking a very rare nap right now so that I will let him see the city display. We now have an almost three week break until we go back in for chemo. Hopefully his neupogen shots will help him avoid a fever once again this time around. If all goes well, we are all planning to be at the CureSearch walk on Saturday.

Saturday, July 2, 2011

Matches anyone?

So, the cast came of Thursday and in the 24 hours before he had to check in for chemo, he took a shower and two marvelous baths. His foot is super sensitive and he is very protective of it. Today at the hospital, a physical therapist came in to show us some exercises to do with him and he was very upset by all the handling and stretching of his foot. I can almost guarantee that PT is going to be the hardest part of this whole ordeal.

I not the type that normally burns up my money, but somehow cancer has freed up my ability to literally blow money, as you can see here:

Despite my reservations about buying fireworks, this is what is getting Steven through a rough weekend of chemo. He came to the store with me to pick them out and has been dreaming about them ever since.

Last night as I sat in Steven's hospital room, I was thinking about the US and healthcare. I know there are a lot of complaints out there about the costs--and trust me, I know they are high and I do think we have room to improve. But even so, look at how well so many people are treated and how well the docs are able to prevent disease. I am kind of blown away by it and grateful that Steven had a firm diagnosis within 24 hours of me taking him to the doctor, and then his chemo started within the week. So for many reasons this weekend, I will celebrate America.