A busy day

Here is a short recap of the last 24 hours:

5:30 I take a call about a van for sale. I call Rob and tell him to buy it.
6:30 I call my brothers and dad for second opinion. I call Rob and tell him to drive it. Steven watches a movie.
7:30 Steven finishes his chemo infusion and wants to sleep. I decide to go with Rob to drive the van. My sweet neighbor comes and watches the sleeping kids.
8:30 We drive the van and start the buying process
9:30 We sign the paperwork at the dealership and head home.
10:30 I'm back at the hospital. Steven has a great night. No throwing up.
I'll spare you the nightime details. He wakes up every 2 hours or more to pee. But I did spend some time in the wee hours of the morning checking up on the royal wedding.
7:30 We walk down to radiology where he gets and MRI. I go jogging.
8:30 He is still in radiology, getting a CT scan. The nurse tells me "nuclear medicine" is coming to inject him for his bone scan. Nuclear medicine? Don't care for that name.
10:30 We get visits from the oncologists. He is ready to go to his bone scan
11:30 Back from bone scan, wanting to finish the movie he started.
12:30 A visit in the courtyard from Aunt Kari and cousin Tyler
1:30 Trying to finish movie, visits from pyscologist, social worker, hospital school coordinator and oncologist with scan results. Scans look good. The tumor has shrunken and there is some evidence on necrosis. Nothing new on the lungs or bones. Good news.
2:00 Movie finally finished. A visits from my Aunt Laurie and Uncle Barry. Visit from his school social worker. Uncle Barry gives him some Navajo treasures and teaches us about their healing traditions. This is the highlight of Steven's day, without a doubt.
3:00 Various phone calls to report scans and firm up car buying details and babysitting plans. He gets a methotrexate level drawn. The number is low-looking much better than last time, most likely we will go Sunday morning.

And now it is after 5 and I'm not sure how the last few hours were spent, but they certainly were. Email, phone calls, homework, Ipad. It has been busy, but things are looking really up today. Good news from the scan, new van coming, lots of support all around us.

Round 6,week 10--last chemo before surgery

I kind of feel like Bill Murray in Groundhogs Day right now. We are back in the hospital for our last round of chemo before Steven's surgery and we are in the same room we were last time doing the same chemo and watching the same cartoon. This time Steven is doing better and today the sun is shining. I hope this round goes better for him. Tomorrow while we are here, he will have an MRI (mostly to help plan the surgery), a CT scan to check his lungs (they don't usually see tumor growth during chemo, but just in case), and a bone scan (to make sure the cancer hasn't spread to other places). We will also visit with the surgeon and get a better understanding of what to expect. If you have any questions--ask them now!

Once again, Steven is getting methotrexate. I'm including some pictures from last time. He is still just getting hydrated right now, hopefully he can start the chemo in the next couple of hours.

Ready, set, go!

Steven went to school all day yesterday and he's back this morning. He may only go half the day because he doesn't know if he can handle the "unpleasant aromas" (his words) of the cafeteria.

After school, we met some of his cousins for an Easter egg hunt. There was a perfect break from the rain. Steven said it was the best hunt ever--his favorite part was that he got mostly coins instead of candy ("money is much more valuable than candy") and there were no limits of how many he could find. I loved this picture of them waiting for the "go."



Needless to say, with a full day of school and an egg hunt, he hit the pillow hard last night. But all in all, I think he's doing quite well.

A few weeks ago, a friend of mine from Columbus sent me this article that I loved. It's about a boy with a rotationplasty who plays baseball. I love these stories!

Easter thoughts

We're home! The doctors ordered another test for his methotrexate levels this afternoon because he was so close this morning and he passed! It seemed almost miraculous for a few reasons--one was that twice during our stay, the nurse forgot to turn his fluids on after accessing his line for something else. So three hours without fluids, plus the two hours of a blood transfusion and he still managed to get out of there. He was drinking water like a champ all morning to clear the chemo and his hard work paid off!

With Easter, I've been thinking a lot about the resurrection of Christ and really feeling more and more amazed at the wholeness of it all. That everyone will be resurrected and fully restored. This whole cancer thing and upcoming amputation has brought it even more into focus for me. I was reading my the Book of Mormon the other night in Alma 11:43-44 says,

"The spirit and the body shall be reunited again in its perfect form; both limb and joint shall be restored to its proper frame, even as we now are at this time. . .Now this restoration shall come to all, both old and young, both bond and free, both male and female, both the wicked and the righteous; and even there shall not so much as a hair of their heads be lost; but every thing shall be restored to its perfect frame. . . and be arraigned before the bar of Christ the Son, and God the Father, and the Holy Spirit, which is one Eternal God, to be judged according to their works, whether they be good or whether they be evil."

Limb, joint, hair!? I read it and felt it was meant for me and for Steven. It does help to know that this is all temporary and someday Christ will restore it all. But even still, it isn't an easy thing. I will think about the loss of his knee and get very choked up sometimes. Other times I am counting down the days until we can get that cancer out of his body and keep moving on. One afternoon, Steven and I obsessively watched YouTube videos of kids with a rotationplasty and we were feeling pumped. Look at what they can do! Look at how they are walking! Tonight I was talking about the surgery with him and he said, "Boy, I'm sure going to look different."

It looks like the surgery will likely take place on May 10, but I will keep you posted as the details become more clear. I'm not exactly sure how to prepare for such a life changing event. Ready or not, it will happen and somehow we will make it through.

A better 24

This morning Steven was sitting up in his hospital bed when I opened my eyes, "Hey Dad, can I play the ipad? ... And I'm starving! Can I have breakfast?"

Awake, alert, and appetite. All good signs this was to be a better day than yesterday. Later in the morning he downed two donuts.

His methotrexate levels this morning were low enough that he could have his first blood transfusion. That definitely helped bring a little life and color back into him too (though I think the donuts worked better :) ).

My favorite part of the day was when we made our trek out to the fresh air in the "courtyard" area of the hospital. Steven said to me as we walked down the hallways, toting his IV pod along, and wearing his breathing mask, "I haven't really seen any other sick kids here." This was a little surprising to me. We passed a few rooms with open doors, "Ah, now I have." he said, as if feeling a little more like he wasn't alone. Maybe we need to get out in the hallways more.

When we made it to the courtyard, there happened to be a nerf football lying there. We played catch for a while. Steven was his old self. We looked for life flight helicopters. When it got too cold we went back in.

My parents came to visit us later on, and his other Grandma is with him tonight.

The rest of the day was spent in good spirits. I'm hopeful his methotrexate levels will take a dive tomorrow.

I felt a bit guilty though as I left the hospital. I get to go, but he has to stay, perhaps two more nights. He's a trooper!

A rough 24

Rob is at the hospital with Steven tonight. Steven has had a rough go of this round. Last night he was throwing up worse than he ever had. This was supposed to be the easy chemo!!! What happened? Not only that, but he isn't clearing the methotrexate as fast as he has in the past. My Easter-at-home dreams are slipping away. I won't give up hope yet, who knows what the morning will bring?

I hope it brings a methotrexate level low enough that he can have a transfusion tomorrow. I suspect that his low red blood cell counts aren't helping our situation here. Maybe new blood can solve some problems. I tried to help him do homework this morning, but he had such a hard time concentrating, he was even crying. It broke my heart because he cries so rarely. So we stopped homework and I gave him the Ipad. Somehow he manages to concentrate on that.

And then there is me. I'm not a big crier either, but today has been rough. I can't go 20 minutes without breaking down into tears. It is so hard to see him suffer, and so hard to see other people suffer. It's going to be an Ambien night for sure--my mind is racing over statistics and treatments and the future and the present.

The highlight of my day was taking the girls to the hospital to see Steven. They loved seeing the place we always talk about--"at the hospital." They even got to see the life-flight helicopter land out Steven's window. As we were getting ice from the ice machine, Laura said, "The hospital is so so so fun." As she said this, a bald and sickly little girl about her age was pulled past her in a wagon. I don't think Laura saw, but the contrast just struck me and I cried, again. I don't think "fun" is the word I would use.

Update

We made it to the hospital and are doing fine. The chemo started around 5:30, which is good. It looks like Easter at home is a real possibility. The nurse practitioner considered starting with a blood tranfusion but that would have slowed us down quite a bit, so we decided that since he doesn't feel too sick, they will do the transfusion in a day or two, when his methotrexate levels are low. They will closely monitor his ph levels and give him sodium bicarbonate as a pill during the transfusion if they need to. That may not make sense to anyone, but there you have it. Oh, and the nurses were shocked that Steven hasn't had a transfusion yet and he is in week 9 of chemo. What does that mean? I'd like to take it as a little miracle, but my worrying self wonders if the chemo isn't killing the red blood cells enough, is it killing the cancer? The only answer they will give is that we have to wait for the biopsy.

In other news, we have been on a quest to help Steven gain weight so that the surgery recovery will be better. We try to get him any kind of food he can dream up. Mostly he wants homemade hamburgers (a result of the anemia?). Andrew said to me the other day--"when can we have something to eat besides chicken and hamburgers? We always have what Steven wants and I never get pasta!" We do eat too many hamburgers. He had one for lunch and dinner today and he has probably had 7 others this week. The diet seems to be working-he had gained some weight. I know it is working for me because I finish up the high calories shakes I make.