I love routine

I am grateful to have a few minutes to write today.

I have actually had more minutes in the last three weeks than I remember having since Thomas was born.

Free, open ended, nothing essential needing to be done minutes of each day.

It has been a while since I've had this kind of time on my hands and it feels like such a luxury.

One day I just read a book because I felt like it. Another I looked through a whole pile of magazines and tore out pages of stuff I like. Another day I made raspberry jam. Another day I took a nap, not out of sheer exhaustion but just because I wanted to. Another day I visited a friend for several hours while our kids played. Another day Tommy and I went and had lunch with the girls at school.

I told Jake the other day that I feel like I'm myself again. The mom who gets to play with her kids, make crafts, process food, serve in my calling, visit friends, read books. I have done all of those things in the last year, but not with the kind of freedom and normalcy that I've enjoyed these last few weeks.

I think that's why its been harder to write on here. Lately, things are so peaceful and normal that I don't want to jinx it. 

I wish I could convey how grateful I was to be able to get my kids ready for the school year. To buy their supplies,  clean out their room and closet, and organize their papers.  I was able to go with them to the back to school night, meet their teachers, and see them off on the first day. It was a true blessing to be able to do that and be there with my kids, especially because the year before that was not our experience. Last year Jake had just had his second craniotomy and he and I were at the hospital on the first day of school, and just trying to get our feet under us for the month after that.

I guess it is hard to really appreciate things until they are taken away from you. I used to see school supply shopping as a chore and stressed about getting back into a routine. Until this year, I never knew what a blessing it was, for me and for my kids, to be the one to get them ready, talk them through, and see them start a new school year. I was so grateful to be physically and emotionally present for them this year and for a merciful Father who has given me eyes to see what a blessing being there for your kids really is.

It really frees you up to have three of four kids in school. And having just one drop off and pick up time, split between two parents is even more liberating. I love that our girls were able to attend preschool, but I never realized how much time preschool takes out of your day. It is another drop off and pick up and by the time you run errands or go home in between you've spent almost an hour in the car. I should have listened to more audio books.

Tommy is also at a great age, where he plays during the morning, accompanies me on errands or to the gym, eats lunch and then goes down for a 2+ hour nap every afternoon. He is a fun little guy and loves his alone time with me and Jake.

I am also grateful to have Jake at home with me. One day last week he left for most of the day, and I was so glad when he came back because I'd missed him so much. I am getting used to having him around all the time. He is such easy company and a helpful companion and I've loved spending all day every day together.

That said, we definitely had to work out a routine to coexist. We both needed some alone time and space and a division of responsibilities and it has been good to talk about those needs and make plans of how to achieve them. I feel like we've developed a good balance so far of how to share the tasks,  do things together, and have time to spend alone and so far we've spent many good days together.

I am grateful that the stress of his disease has been somewhat alleviated. He hasn't had any surgeries for months, his treatments are on a regular schedule, he hasn't had any surprising side effects, and things just seem to be going along fine. Again, I don't want to jinx anything but do want to express how grateful I am for even these few weeks of normalcy.

I am appreciating a regular predictable schedule and lifestyle like never before.

A post from Jake

We have been fortunate enough to make the rumor mill. Someone asked Jordan if we'd moved (after being gone for a month this summer), and then someone else said they'd heard that the doctors had stopped all treatments on me. I hate to squash the speculation, but we're not going anywhere and I'm still receiving treatment, including the scalpie stickers that are warming my head at this moment. 

On July 14, 2015 I had a brain scan. That date was chosen because the doctors’ schedules were such that I couldn’t have had one until the middle of August. That was too long to wait. So Jordan and I made a one day trip down to Phoenix from our month long stay in Utah. It was nice to have a get-a-way. We knew that the scan wasn’t going well when it happened. We prepared for the worst. Sitting and waiting for bad news. Then, the doctors said they couldn’t really see anything new. My brain looked just like it did on my scan in May.

Since that time, I’ve slowly gotten better. I now have an IV infusion every other week of Avastin, a protein-blocker that clears the swelling and will give a better image for the next scan. Because it reduces the swelling in my brain, I’ve been able to go off of the steroid. The steroid was no good and I'd been on it for 5 months, with no success in weaning off. It is bad because it weakens the immune system, increases blood sugar, and makes weight in all the wrong places (e.g., stomach). It did all kinds of strange things to me (itchy skin, lack of sleep, etc.). Getting off of it was good.

Other than being on chemo last week (I still take 5 pills every month), I’ve been feeling pretty good. I got down on myself last week, but Jordan put a stop to it and explained away my worries because of the wear and tear of chemo! Today I felt much better. We got off to a slow start because Jordan and I were having a good discussion too late at night. Once my mind starts pondering scenarios, it’s over. I expected to wake up fatigued, but that fatigue didn’t set in. So today I spoke to Jordan, called my dad, made a video, had some lunch, went to the gym, went to Costco, went to go get the girls, ate dinner, browsed the internet, attended family home evening, put Tommy to bed, and finally, wrote this paragraph.

My next scan is 9/8. Before then, I’ve got a football trip to Nebraska with my daughter Ellie. I’ve also taken on a a whole new role with house chores. I am the laundry man now, and I’ve never had to ask which girl’s thing belongs to whom, but am learning to get it all sorted out right!  It's tough because Lauren, Ellie and Ada all wear the same clothes and then they pass them on down, but I'm learning and will keep working.

I am so grateful to be in the rumor mill and to know that people continue to think of, pray for, and inquire after me and my health. I am indebted to you all and am grateful for how much you care.  

Sometime soon we'll update the blog...

but for now we are

HOME
after being out of town for a month

ALIVE
especially Jacob after a stable July MRI

BUSY
getting ready to start school, sorting through a months worth of mail, washing clothes

and

HAPPY
to have had such a wonderful summer.