And another weekend awaits

Tomorrow morning we've got another round of chemo coming. Steven will have a dose of Cisplatin and Doxorubicin over the course of 48 hours. These are the same ones he had the very first time he had chemo--the ones that make him very nauseated and eventually bring his counts down really low. This time he says he doesn't want to take any of the drugs that make him sleepy--he wants to play the iPad. We'll see. The nurses and doctors really try hard to control the nausea. They worry about anticipatory nausea. One nurse told me about a patient who saw his nurse at the grocery store and threw up in the aisle. I don't know about Steven, but I guarentee that I've got anticipatory nausea tonight.

Someone else

Steven is at school today and is doing pretty well. He still won't let me shave or pull out the rest of his hair, so he has got just a few patches of very short hair left. And it bothers him to touch it with a hat or anything, so he has been bare headed lately. I think he'll be a lot happier about school when it is warmer or when he starts wearing hats.

I just wanted to share a few things he has said to me recently. When we were waiting to be discharged from the hospital, he laid his head back on his hands and said, "You know, this place really has great service. The nurses are really nice and will get you whatever you want. When you have to have a scan, they let you watch a video. I mean, it's just a great place. The only thing that isn't so good is the food."

And then last night he said, "I keep thinking about this Calvin and Hobbes cartoon where they get robbed and the mom says, 'This is the sort of thing that happens to someone else' and the dad says, 'I guess someone has to be the someone else'. I keep thinking that is what it is like for me. I never thought I would ever get cancer--I thought that only happens to someone else." I told him it was probably a good thing that he never thought it would happen to him--chances were that it wouldn't. He thought about that for a while. I think he was wondering what it means that he is one of 5 in a million kids to get osteosarcoma.

I've thought about that a lot myself. Another recent conversation we had gave me hope that maybe it's so he'll be motivated to work on a cancer cure someday. He was reading a book about different jobs people have and he came across the job of biochemist. He got really excited and called me over to read about it. He said, "I bet there is a lot of money in cancer research. Maybe I could be a biochemist when I grow up." Perfect. The only thing better is if someone beats him to the cure.

Steven cleared his methotrexate. His level was .08 and it needs to be .10 or less to leave. We just need to get discharged and we can leave.

Thank you

I've mentioned before that Steven's cancer diagnosis on top of my sister, Alisa's, cancer recurrence has been hands down the hardest thing I've ever experienced. Watching people I love suffer? Hard. And wondering about the future? Well, I can't really go there in my mind too often, but when I do, it's a scary place.

The other night I was reading the Book of Mormon in Mosiah chapter 24. The story is of Alma whose people were enslaved and really suffering. They "pour out their hearts to [God] and he did know the thoughts of their hearts." God promises he will deliver them out of bondage and and "ease [their] burdens." The stuck out to me was later in verse 15: "And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord."

This scripture struck a chord with me because I see that in my life. (Okay, I admit I'm still working on the cheerful and patient part.) The cancer is here--we have to go through treatments and surgery and all that it entails. But God has eased this burden for me and my family. He has strengthened us. Our trials are the same but somehow we are handling them.

I know a huge part of this is thanks to the faith, love, prayers and actions of people all around us. I am amazed at all of the thoughtful, generous, supportive things that people have said and done for us. I have shared very little of that side of the story here on the blog, but it has been a huge thing. Some things are big and some are small, all of it helps.

Many of you have commented on the beautiful quilt that a mom from Steven's school class made him. It is one of many kind gestures we see almost daily here. I wanted to share the words of encouragement that came with the quilt:

"All of us wish we could be with you all the time cheering you on and helping with the fight. We know we can't do that so we offer you our hands to hold you up and help lift your burden. Take this quilt with you to your treatments, read the memory block and remember the good times. We care and wish you well as you battle! On to VICTORY!"

That is how I feel about all the kindnesses that each of you has offered--you are lifting us up and making our burden lighter. You are cheering us on to victory. I think you would be hard pressed to find a more supportive family, group of friends, school, employer, and church congregation than we have.

So thank you. Every one of you. Even checking this blog helps. Steven can never believe it when he sees counter at the bottom of the blog. I tell him--people have thought of you that many times! And way more.

So thank you everyone. I have a whole new understanding of 'support'.

Steven finished his infusion of methotrexate a few hours ago. Once again, he isn't feeling nauseated. He has a couple of little mouth sores, but they don't look too bad. He acts like they are killing him, though. He will likely get a few more with this round, but the doctors are really encouraged that they are so minimal. The doc this morning told met that it is really good for Steven that these side effects are mild--these side effects aren't necessary for the chemo to kill cancer. Now the low blood counts are a different story. But the less we have to deal with mouth sores and nausea, the more likely it will be that we stay on schedule. I'm feeling so grateful right now.

I'm working on a better post, but I thought I'd let everyone know that we are doing fine over here. Steven's been at school most of the week and has been feeling fine. He is scheduled for his next round of chemotherapy Friday morning. In the meantime, we are feeling almost normal over here. Sort of.

Coming home

Hooray! Steven gets to come home this morning. His methotrexate numbers are down this morning to .10--just enough to release him from the hospital. He may even make it home in time for church.

My last post was a little innaccurate. I guess what they test is his blood to see if the chemo is gone. It is an expensive test--something like $500 each time they do it. They test him several times during the first 24 hours to make sure his body is clearing it and after that they only test him once a day. So if he tests at .12 or even .11, they have to wait until the next day to test again and then release him. Having any of this chemical stick around in your body is really dangerous, so they have to keep fluids going all the time to flush it out.

In other news, for the first time in my life I care about March Madness. Maybe it is just something to think about other than cancer. Go BYU! Even Rob is cheering for the Cougars this year (along with the Buckeyes). Steven was in an overflow area in the hospital this stay instead of the locked down ICS unit. I brought two of his cousins up to watch the game last night. It was great fun. He even watched most of it, but he was perhaps more interested in the book on nuclear distasters I brought him from the library. He is liking basketball, but I think we know where his real interests lie. His nurse said he hadn't seen a kid his age that liked CNN so much.

Bored and loving it

Things are going well here at the hospital. Steven seems to be tolerating this chemo very well. He hasn't had nausea medication since last night--right before they started the infusion. I was unprepared for this. I didn't even bring his homework to the hospital because last time we were here for chemo he was really out of it and not feeling well. I won't lie--bored is AWESOME! So now we wait until there is practically no trace of methotrexate in his urine and then we can go. I still don't know how long it will be--maybe Sunday or Monday. I keep thinking that it must be all the prayers going out for him--thanks everyone!

My favorite quote from him today came from this afternoon. His uncle brought a game to play with him, but Steven was in the middle of an iPad game. It must have been intense because he said, "Uhh...I'm kind of in a tight place right now." Yep--you kind of are, buddy, but you've been in them before. It may take a while, but you'll get out of this one, too.

Luck of the Irish

Steven's counts came back great yesterday and the ICS unit was full which means he is able to start his next round of chemo today, but we had to wait for discharges before we could get a room. Which means he got to go to school again this morning. This was exactly what I was praying for. We are settled into the room and he's getting iv fluids to prepare him for round two of chemo. This drug is called methotrexate. It will be a 4 hour infusion and then he is given iv fluids withsodium bicarbonate that helps reduce the acidity and helps his body flush it out. We will be able to go home as soon as it is all the way gone from his system. The average stay is between 2 and 5 days. This drug will make him nauseated while it is in his system but shouldn't produce the same kind of delayed nausea we saw with the last drugs. It shouldn't bring his counts so low either. The side effect it has is the one I fear the most--mouth sores. There is certainly a range of reactions, he may be just fine. The sores usually start showing up in 5 to 10 days after he starts. We will get a feeling for how he reacts then. In the meantime, we are watching CNN and March Madness and waiting. Also, hoping that luck is with us and that the tumor fears this drug as much as I do.

Some pictures

These pictures from the last few weeks really belong on the other posts, but I haven't taken them off my camera until now.


Here we are at the hospital during round one of chemotherapy. Steven slept through much of it.


He got a visit from Aunt Alisa--his cancer buddy.


A walk in the park was a great idea last week. Don't be deceived by the picture--Addie can't really push that wheelchair.


Playing chess with a buddy from school.


Feeling better and laughing at a song on his Ipad.


He made it back to school today. Hooray! His class presented him with this beautiful quilt to show their support.


Reading Calvin and Hobbes with some of his best friends from our time in Ohio.

Home again

Not to leave anyone hanging--we did get to come home yesterday. His ANC counts were at 400 on Tuesday, and so he came home on IV antibiotics until we know his counts have reached 500. He's feeling great--his appetite is back full force and he's acting like his old self again. We are going to enjoy it while it lasts!

A new do

Steven's hair has been falling out fast the last few days. When I tried to comb it to collect the falling hairs he wouldn't let me because he didn't want more to fall out. My sister jokingly suggested he wear a hair net to keep it on his head. He got a good laugh thinking about being a lunchroom server in his state. By bedtime he was very irritated by all the hairs in his face and pillow that he finally agreed to buzz it off. I had big picture and video plans for the ceremonious haircut, but Steven was in no mood to allow that. Our nice nurse brought in the clippers and went to town. When it was all over, he was still really irritated--this time by the short stubble left behind. So our nurse tracked down some duct tape and we tried pulling out what we could. We got quite a bit and he finally went to sleep. It must have been okay because he slept pretty well. They let him sleep without iv fluids. He's in better spirits this morning.

Yesterday, his fever came off and on all day. So far today his temp has been normal. They've run tests and cultures and so far nothing has shown up for either a virus or a bacteria. The doctor said that is not unusual. Often times they never know exactly why the patients have fevers. If his fevers stay away, we should be able to go home tomorrow.

We've had a nice, peaceful Sunday. I was able to go to a short sacrament meeting here at the hospital. I've been really worried about my sister lately. It was nice to feel some comfort that God knows us and loves us.

Normal temps

Good news this morning--Steven's fever broke sometime between 4am and 7am. He was on his second bag of antibiotic. It doesn't totally rule out the virus possibility but it does mean that if it is a bacterial infection, it is not a super strong one and is responding to the antibiotics. The nurse told me not to get my hopes too high--the fever could come back in waves throughout the day. But I can't help but hope our stay is as short as possible. The docs will be around in an hour or so and we'll know more then.

More good news is that Steven ate a nice big breakfast this morning. He's finally able to enjoy the room service situation over here.

Hospital too soon

We are back at the hospital again tonight. As we were walking up to the entrance at 5pm and the sun was shining, Steven said, "what a bad way to end a beautiful day.". It was a nice day. We took a walk at the park and then a friend from school came to visit him after school. Jackson caught him up on the latest happenings at school and played chess with him. It really cheered him up.

Despite the sunshine, all day I've been worried about a low grade temp he was running. It was around 99.5 or 100 most of the day. The rule is that we call if we get two readings of 100.5 thirty minutes apart or a one time temperature of 101 then we call. So when I took it at 3:30 it qualified and they had me wait an hour and take it again. It went up one degree and so we came to the hospital. By 5:30 it was 102 and by 6:00 it was 103. They are doing a strong iv antibiotic and doing cultures on his blood to figure out what bacteria he has and which specific antibiotic will work the best. We can leave when his temp is gone for 24 hours, his neutrophil counts are high enough and under one other condition that I can't remember. The average stay is 3 days and it may affect his chemo schedule (he is supposed to start his next round on Thursday).

So here we are. I told Steven it was too bad we never made his hair pulling out video and he said, "I have to admit that I don't really want to lose my hair". It made me sad. Hopefully this stay won't be so miserable as a chemo infusion. We'll let you know.

Zero

It's Thursday and Steven had more labs run today. His last ANC or neutrophil count was .2 or 200 and now they are 0. Steven said, "They can't be zero--there must be some in there." I don't know enough about it to say with all certainty, but the number they gave me was 0.0, so it seems kind of like zero to me. So, I guess school is out for tomorrow and Monday. I not feeling as dissapointed about it as I was last time--maybe because now I'm scared of infection!

We had another good day today. We got to wish Steven's cousin, James, a happy birthday. Steven wanted to surprise him with something and so we brought ballons and a cake. It made a huge difference in his attitude.

This afternoon I noticed a lot of hairs on his shirt and chair. He started tugging at his hair and sure enough, lots came out. He started to tell me about an idea, but it made him laugh so hard he couldn't spit it out. When he finally stopped laughing, he told me he wanted to play a trick on people where he acts really mad and starts pulling his hair out. We'll have to make a video--I'm sure we could use it in our family film festival somehow.

A better day

Although physically, Steven had a little harder day today (his head hurt a bit, as well as his leg), we had a better day emotionally around here. Some things he did today: held his new baby cousin, practiced the piano, visited his grandma, played chess and an Ipad game with a school friend, had a piano lesson and started a new book.

Still home

I'm sorry to report we are still homebound. Steven's counts came back low, which was no surprise--we anticipated Monday as the low point and that is when they took the sample. His ANC count was .2, or sometimes they say 200. It needs to be over 500 in order for him to go to school. I assumed that they would let him go maybe tomorrow--assuming they would have climbed--but I guess we need to wait until his sample on Thursday comes back until he can be back in crowds.

So, we continue on. I'm finding that there is a reason that I have never considered homeschooling an option for me. This being at home and trying to keep Steven progressing along with keeping up the house and paying the proper attention to the girls is a challenge. I'm sure we'll get into a groove and things will be better. And hopefully he'll make it to school soon. I think it will do him so much good to be around normal for a while.

A message from Addie and Andrew

Addie has memorized the words from a balloon that Steven got: Get well soon. She writes it everywhere--on the white board, with chalk on the sidewalk, with refrigerator magnets. This morning she decided to write it backwards, then Andrew saw it and had to add on:



The sign gave Steven a good laugh. The good news is that Steven does seem to be feeling better. He woke up yesterday and called the first waffle. He even ate a hot dog for lunch today. I seriously never thought I'd count "my kid ate a hot dog" amongst my blessings, but there you are.

Status update

So many people have asked, "How are you doing?" I thought I'd take a minute to answer.

Steven: It's 9:30 and he's fallen asleep in his chair. He's doing pretty well, considering. He's had a cold this week otherwise he said he thought he could have gone to school. He has had some nausea--very little food sounds good to him. He has thrown up once since we got home on Sunday. Last night I took him to visit his cousin and he chatted with me the whole 30 minute drive, which was great because he's been a bit withdrawn since this all happened.

Andrew: He seems to be going along just fine--he is teasing the girls a little more than usual, but for the most part seems to be trying to make this whole thing easier by doing what he is told. Last night while Steven and I were gone, Rob put the girls to bed and then started working a Rubiks cube. When he finally realized it was way past Andrew's bedtime, he went to check on him and Andrew, who had put himself to bed, was fast asleep.

Addie and Laura: My girls who have always played together beautifully are now fighting ALOT. They fight over who gets to get things for Steven, who gets to sit on my lap, who gets to say the prayer, who gets the kitty spoon, etc. Laura has figured out pinching. TROUBLE! Laura asks me several times a day, "Will you hold me like a baby?" I think they are needing more mommy attention.

Me: I'm hanging in there. I feel so torn with all the needs of my kids, worried about my sister and her little family, worried about Steven and his spirits, worried about all my kids. I'm eating again, but now it's way more junk food than I need. At the same time, I am overwhelmed with gratitude for all the kindness that people have shown us--it is just amazing. Little things that people do that are just exactly what we need right then. I am feeling loved, for sure.

Rob: I think I'm going to have to have Rob post his own status. Does the rubiks cube story give a clue?

It's a sunny day and I think I'm going to take my kids to the zoo. I think we could all use a little fresh air and sunshine.

Sunny California

Just before Steven went into his biopsy on Thursday the 17th, we asked the doctors if it would be okay for us to take a trip to California that weekend--before the chemotherapy started. They said it may be the only time we would able to go that far until he finished chemo, so we decided to skip town. Steven had always wanted to see the ocean.

It was so nice to get away and to be distracted as we waited to start the chemo. As soon as the airplane landed, I wanted to eat--something I hadn't been able to do for days. I kept my appetite the whole time we were there--amazing! We left the girls with my sister and took along her son, James--one of Steven's best friends.

Steven loved the ocean. He had to keep his incisions clean, so he couldn't get in. He was sad about that, but had a great time finding sea shells and running from the waves. We went to Sea World, Legoland and the San Diego Wild Animal Park. We made some good memories--hopefully good enough to see us through this hard year.




Feeding the Lorikeets--one the highlights


Legoland--my boys' dream destination


A water fight in February--does it get any better?


We gained a new appreciation for wheelchairs.


Our hotel was right on the beach--it was amazing. I love the mountains, but I can totally understand the draw to California. I can't wait to go again when this is all over.