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!

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.

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!

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.

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!

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.

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.