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


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


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


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.

Friday, September 9, 2011

Still here

I will update better later, but for those wondering, Steven's methotrexate levels were pretty high this morning, for him anyway. The NP assured me that he was clearing more like the average patient, and that it is nothing to be worried about. She said that their bodies get so tired of cleaning the poison out of them that they slow down a little at the end. He has been so quick to clear in the past that it was a hard pill to swallow to hear that we had to stay another day. Anyway, here we are. So far it's been a fun day--I'll post more later.

Tuesday, September 6, 2011

Steven is just over an hour away from finishing his bag of chemo from round 15. Then it is a typical methotrexate stay--we will be here until at least Friday morning and possibly until Saturday. So far he is doing okay. He is watching movies in an effort to stave off the nausea. I took his leg down to Shriners after we got here. The prosthetist decided not to make the modification that we had talked about and sent me home with it. It is complicated, but I am happy with the arrangement. Carrying the leg around, I think I got more stares than Steven did walking with it. He got to go to school for a few hours this morning and he wore his leg. He was really happy to be there and it made me sad to take him from school and up to the hospital. He was in the middle of PE and having a grand time. So here we go again! When this is done, he will have just three to go. The end is feeling tangible.

Thursday, September 1, 2011

Leg day

We have been waiting for this day for so long--Steven got his leg. I wish I could say that it all went super smoothly and we all did a dance of joy, but unfortunately, the day has come with some sad realizations as well.

I'll back up. We started off the day by stopping into the hospital to get Steven's labs done. Usually, this is done by a home health nurse, but she doesn't come until the afternoon, and I wanted results earlier, so we stopped in on our way to Shriners. It went well, but we cut the appointment close and were a little late and rushed. I suppose it didn't matter much, Shriners was busier than I'd ever seen.

By the time we finally got into our room, we were well on our way to missing the PT appointment altogether. I called up to PT and told them the situation, and the therapist was nice enough to come down to our room and work with Steven while the prosthetist made adjustments on the leg. They were working together to make it just right for Steven.

This sounds so ideal, and really it was, but unfortunately, Steven was so tired and hungry by this time, that he couldn't deal with all the poking and prodding. They were trying to get him to explain what bothered him and he just cried even harder. In the meantime, I got a call with Steven's lab results which confirmed that his hematocrit is low--25.4, almost low enough for a transfusion. (On the bright side, his ANC is up.)

At one point they were talking about the leg needing one more modification and deciding if should keep it a little longer to work on it. Steven had been so looking forward to this day, that they let him take it for the weekend and then I will bring it back on Tuesday when we are up for chemo.

The whole thing was frustrating, especially for Steven. I know there were physiological things going on, but also the psychological stuff was pretty heavy. He couldn't even articulate where his foot was bothering him, let alone why he couldn't stop the tears. As I was thinking about it as we drove home, I think that maybe it has to do with just how much work is still ahead. It isn't the sort of thing where he can magically walk now that he has a leg--in fact, he walks much slower with his leg on and he still needs crutches. It is going to take so much patience and hard work.

I am confident that he is strong enough to do it. And as far as patience goes--well, you may remember my story of the first time he learned to walk. This time it is more than balance that he has to gain before he will walk again. And this will require time and diligence--there is no way around that. Maybe patience is one of the life lessons that cancer will teach him.

As we were waiting for the prosthetist to make adjustments to the leg, I was reading a magazine and I showed Steven an article about cakes. He was starving and he thought it was the most beautiful picture in the world. I had Rob pick a cake up for him on his way home from work. He loved the cake and our little party (we even sang "Happy leg day to you!") cheered him up. Like every other aspect of this journey, we will take this walking thing one day and one step at a time--somehow we'll get through it.