Merry Christmas!

We are grateful for another year that was spent undergoing surgeries and treatment, embarking on a family cruise to Mexico, transferring onto long-term disability, giving a fireside (jtrainride.blogspot.com), celebrating Jordan’s 35^th birthday, taking a trip to Michigan, and Jacob baptizing Ellie. We’re grateful for the Savior, who was with us through it all.

Lauren (9)- Participated in chorus, made honors, read a million words, played volleyball, started the violin, and shows great compassion on hard days.

Ellie (8)- moved up in piano, went to BYU soccer camp, traveled with Jake to Nebraska for a football trip, recently had a birthday, and is aware of everyone’s needs.

Ada (6)- started piano lessons, graduated pre-school, started kindergarten, played her first season of soccer, made many crafts, and is the peacemaker in our home.

Thomas (2)- voicing his opinions, friendly to people he meets, loves to eat, started going to nursery, loves Daniel Tiger, Elmo, balls, and trucks, and makes us smile every day.

December 2015

December was a great month around here. We are starting the stage where our kids have holiday events and activities and it makes for a good dose of Christmas spirit.

We started out the month going to see Lauren's school chorus sing at the mall. They had their official concert the following week and we loved seeing her sing up on stage. Ellie got to go on a field trip to see the Snow Queen and enjoyed that play and time with her friends from school.

We watched the First Presidency Christmas Devotional with Jacob's parents and loved the spirit we felt from the songs and messages shared.

 

The following week Jake and I took Lauren and Ellie to the Phoenix Symphony production of Handel's Messiah. Jake and I have gone almost every year, but it was the girls first time attending. They did really well and absorbed the spirit of that wonderful music. 

 

The next night Jake and I were invited to attend the Cardinals game with his boss Howard and his wife Vicki. It was a great night and an amazing game with a last minute win and we loved spending the evening with them.  

 

The girls also played in a piano recital and had two Christmas songs to play in front of a packed audience of doting parents and grandparents.  We love their piano teacher and are so grateful for the way she's helped them progress on the piano. I had a lovely book club meeting where my sweet friends shared wonderful Christmas gifts with each other.

Our ward Christmas party was later that week and we loved the luau theme and the delicious meal. The kids got to sing in the program and sit on Santa's lap. Tommy did much better than we were anticipating and it was fun to see him overcome his Santa fear. 

 

Lauren had a strings concert last week and it was fun to see her playing the violin. Ada had a kindergarten concert and was so darling singing up on the stage with all of her little friends.  Even Thomas took his turn up on the stage.

Last weekend Jake took a day trip to Las Vegas to watch BYU's bowl game with members of his family and mine. It was a sad ending, but a fun day for him. That night I took the girls to our traditional viewing of the Nutcracker ballet. It was fun to have a girls night out with them and see them enjoy that fun production.

Last Sunday we hosted our traditional cookie party with friends from church. As usual, I forgot to take a picture, but it was a fun night with a good spread of treats.

 

This week was fun and started out with the kids getting to have a morning play date with Ada's kindergarten teacher while Jake and I attended Star Wars with some generous friends. We went out to dinner the next night with good friends and loved driving around Moon Valley and looking at some amazing lights with them. 

Phoenix really does lights well and all month we've spent many nights driving around and appreciating beautiful Christmas lights together. We've seen yards filled with blow up figures, houses completely covered in lights, a string of 11 homes flashing their lights along with music on a radio station, and a live animal nativity complete with real animals, hot cider and a fire pit. Looking at lights is one of our favorite family traditions.

We are grateful for the people in our lives who made this month extra special. We rejoice in the birth of the Savior and are grateful to know that Jesus is the reason for the season.

Status update and a Christmas video

As there has been increased traffic on the blog, I wanted to post a status update on Jacob so that you don't have to scroll back for months to get the story.

Currently, Jake is feeling great. He completed a round of chemo at the beginning of the month that was rough, but he rebounded quickly and has had a few good weeks.

His status is stable. This kind of brain cancer never goes into "remission" but rather it is watched every other month through MRI and as long as things stay the same the individual is considered stable.

Jacob's last surgery was at the end of April of 2015, followed by 6 weeks of radiation through May and June. In July he started to wear the Optune tumor treating field device and according to the reports wears it 89% of the time. That means he has the pads on his head and electrode fields active for all but a few hours of each week.

He continues to take an oral chemotherapy pill, Temodor, for 5 days in a row each month. Those pills make him nauseated, tired, and mentally foggy but he has taken more than 15 rounds of the medication and learned some coping strategies.

He is also receiving Avastin infusions once a month that have really helped to alleviate the swelling in his brain. He has tapered down from an infusion every other week to an infusion once a month, and may continue to taper down more.

We met with his neurooncologist on Tuesday. Jake was in a white shirt and tie, as we were headed to the Mesa temple after our visit, and the doctor was so encouraged by his appearance, overall healthiness, and diagnostic measures. She said that seeing him doing well was a wonderful start to her day.

At the same time, as we asked her about treatment options going forward she said that she really doesn't know. Jake has been an unpredictable patient and she, like us, doesn't know what to expect in the future. She said that they will just plan his care from scan to scan which is what they have really been doing all along.

We still have moments of great sorrow because of his disease, but they are few and far between as we've have learned better coping mechanisms, how to live in the present, and how to see the blessings that God gives to us each day. In some ways, it is a much better way to live because we have been able to see God's hand in each day and have come to be personally acquainted with the Savior, Jesus Christ, who is the author of our faith. We are also surrounded by four little people who keep us occupied, focused, and laughing with the childlike joy they bring into our home.

We appreciate each of you who come here inquiring after Jake and sending your prayers, wishes and thoughts for his health. I can't think of a prayer that Jacob offers where he does not thank Heavenly Father for all those who pray for him and asks for God's blessings to be upon each of you. He is there for us ALL.

Time to sit with Him

Last week was emotional, exhilarating, exhausting, energizing, and overwhelming. I arrived to Sunday night feeling burned out and spent.  I often get to a point where I am worn very thin, and then take it out on my family members by being short tempered and impatient. I think part that is life with four young kids.

Well, I handed over the bedtime reigns to Jake and took to our room to have a few minutes to pray and communicate with Heavenly Father. That is what I really needed. I am so rarely alone, which is a blessing, but it makes one on one personal communication with heaven hard. I know that we can pray in any situation or in any place, but there are times where personal private prayer is so necessary and hard to come by when you're with little people at all hours of the day.

As I poured out my thoughts Heavenly Father I felt that He was really there and listening. It was so comforting to feel of His love and reassurance and to know that He knew my heart. After I prayed I read some articles from the December Ensign and appreciated the perspective they gave me.

Then I prayed again. This time expressing the new thoughts I was having and more gratitude for the opportunity to communicate with Him. Then I read a few more articles in the Ensign and landed on this one from Elder Christofferson about how to Be at Peace.

I loved his thought of taking time. Time to stop. Time to listen. Time to ponder. Time to sit quietly with that baby in a manger.
 
Then I prayed again, saying only that I was ready to listen. And then the quiet thought came to my mind that to have better peace, better perspective, better direction from Him I needed to take time to be with him each day. To let Him warm me like a fire in winter.

I felt the truth of this thought and spent a few minutes thinking about how to adjust my routine to make it happen.  I then emerged from the room and talked to Jake and the kids about the prompting I felt. And they agreed to help me have that time.

One hour each evening to be alone, to have quiet, to sit with the Lord. I don't know exactly what it will look like each night, but I want to make the effort. Tonight I prayed, wrote in my journal, read a few chapters of scripture and then came to record some of our story, our history, on here.

And I really feel a lot better. More focused. More peaceful. More in tune with the Spirit of the Lord.

I know that Heavenly Father can give us each tailored instruction. Help. Direction. Specific to our needs and desires. I am grateful for His direction to me and for the peaceful voice of the Spirit that I can hear when I tune in to Him.

Resetting Priorities

 

Over the summer I posted two flyers announcing a presentation, a fireside, that Jacob and I would be giving at different locations in Phoenix and in Utah. We have finally distilled that presentation down and wanted to post it online for all of you.

We are so grateful for the individuals who helped these events come to be. The managing partner at the Phoenix office of Perkins Coie, our dear friend Mandi, and our parents were instrumental in arranging these meetings and giving us the opportunity to speak.

Many of our friends and family members were able to attend in person, and we are so grateful for all of those who came to listen to us talk. It was overwhelming enough to put ourselves out there, but having rooms full of people we love and appreciate and whose faith has sustained us melted our nerves away. We were able to open our mouths and speak from our hearts and the kind reception for the things we shared was overwhelming to us.

We know that there were many people who were not able to attend either of these presentations, and apologize that it has taken us so long to get the content out to you. We did make a video recording of the night, but felt that it is more personal than we want to put out online, so we decided that posting the written document felt more comfortable to both of us. It is a long document, 14 pages, and was given orally over a 50 minute period.

I wrote this in the PDF, but for those who have questions about any of the terminology that we use, especially LDS ecclesiastical terms, please reference on either LDS.org or Mormon.org for the most accurate definition.

Please feel free to share this talk with anyone it could help. We have been blessed and helped so much by others who have gone through a similar experience and opened their hearts to us and hope that we can do the same through sharing these words.

Another seizure

At the beginning of October Jacob had another seizure.

It was actually on Saturday evening, after the priesthood session of general conference.

Jake had gone to the meeting with his brother Matt, and the were at home watching TV on the couch when my sister in law Jessica and I returned from an evening out shopping with the kids. We were all in the family room together on the couches, when Matt alerted me to Jake having a seizure.

I was on the opposite couch and looked over to see him in a grand mal seizure. It came on so quietly and imperceptibly, that no one even noticed for several seconds. All of the kids were in the room, and were immediately scared. A few of them started crying, and thankfully Matt and Jess had the presence of mind to take them out of the room.

I had left my place on the other couch and went immediately to Jacob's side. As with his seizures in March, an overwhelming calmness came over me and I was able to calmly speak to him, telling him to breathe and that it would be over soon.

The seizure was over quickly, and he returned to alertness within minutes. His right arm was still immobile, and his speech was slurred, but within a few more minutes his arm was moving and he was able to answer questions with one or two word answers.

When he was restored, I ran back to check his pill box and saw that he had missed his morning dose of Keppra, his anti-seizure medication for the last two days, and then another morning in the same week. I got the pills and had him take them once he could sit and swallow, and for the next two hours he did not seize again.

In fact, he was soon able to sit up and we brought the kids back in to see that he was ok and he was able to tell them each goodnight. He still felt very weak and was tired but his words and movement came back so much sooner than with his seizures in March.

I had called the hospital and spoke with the on call neurologist, who told me to keep him home unless he seized again since he had missed some doses of his medicine.

Gratefully, for the next hour Matt was able to sit with Jake while I went back and talked to our kids and got them into bed. I won't go into all the details, but thanks to my counselor and the guidance of the Spirit I was prompted in the things I asked them about and just listened to each girl's experience, what they remembered, what they felt, and what they feared. We prayed together and it was a blessing to be able to reassure them before they went to sleep. We are continuing to talk about the seizure event and help each of them, and even Tommy, to process the event so that they are not so traumatized by the experience.

Our home teacher came over and he and Matt gave Jacob a priesthood blessing. I am so grateful for priesthood blessings and know that they are a vehicle to convey help and an increase of the Spirit when we need it most.

After the blessing, Matt walked Jake back to our room while I was seeing our friend out at the door. Matt said that Jake went to the restroom, and then came back and was sitting on the edge of the bed. He looked unwell, and Matt asked him if he was going to seize again. Jake said yes, so Matt told him to lay on his side on the bed and almost immediately he had a second seizure. Matt called to me and I came in and found Jake seizing on our bed. I went right to his side and just touched his arm as I looked in his eyes and spoke to him again, reminding him to breathe, that it would pass, and that I was there.

After this seizure I knew what to do, and when it subsided was on the phone with 911. They had the ambulance here in 10 minutes and the head paramedic and I recognized each other from before. Jake was again recovered so much more quickly and was able to answer some of their questions as they got in an IV and loaded him up on the bed. I followed the ambulance in our car, so that we'd have a vehicle in case he didn't need to stay the night, and we went back to St. Joes. I think they wanted to take us to a closer hospital, but since none of them had seen Scalpie before and were a little intimidated by what the head device was and did they took him to where his records and doctors were located.

Matt came down soon after and the three of us sat in the emergency triage area for several hours, until we sent Matt home to get some rest. He was in the middle of his finals and had some serious test taking ahead of him. The nurse gave Jake an IV of Keppra, and soon after he said that he felt much better. They ran an MRI several hours later, and waiting for that was the worst trauma, but the neurologist came in and said it looked unchanged from his scan in September and that we were free to go.

So we got home at 4:00 am and thankfully Matt and Jess were able to spend the night, get up with the kids and let us sleep until 11:00 am. We spent the next few days sleeping and napping to recover, as Jake especially needed to rest.

It turns out that the Keppra does lose it's potency in your body if you miss any doses of it, but it doesn't manifest until a month or two later. Jake had always been faithful to take his pills, but in August missed a morning dose. We were both worried, but nothing happened. Then a week later he missed a morning dose again, but nothing happened. This went on for several weeks, and truly unintentionally he'd miss a morning dose or two a week, but nothing happened so we both started to think the medicine wasn't really that necessary.

Well, we learned better.

This experience was probably the least traumatizing for me, because it had happened before, but it is still a very scary experience to see someone, especially someone you love, having a seizure.  But for everyone else in the room- Matt and Jess, our kids, and especially Jake it was very frightening. Unlike his seizures in March that he has no memory of, Jake was conscious during most of these seizures and remembers feeling trapped in his body. He wanted to yell out but could not, nor did he have any control of his movements. I can't imagine how terrifying that would be.

We went to counseling the next week and as time has passed he has been working through the experience and finding more and more peace. He has taken his pills faithfully and has tied them to the plugging in and out of his medical device so they are part of his morning and evening routine. He is not able to drive for a while, nor does he want to, and we are grateful for friends who are able to help us with the multi-kid shuttling.

It was not a fun experience for any of us, but we really feel that if it had to happen, it could not have been in a better way. It was so fortunate that we had Matt and Jess here to immediately step in and help, that Jake was sitting down (not standing, driving, alone with kids, etc.), that he was able to recover so quickly afterwards, and that there was nothing troublesome on the MRI. We will still go in for his regular bi-monthly scans in a few weeks, but thankfully he has been able to continue functioning as usual. We don't take that blessing for granted.

However, as I've said before, a very  difficult part of this disease is that it is so incompatible with being young. Many older people will tell Jacob that they can relate to his issues of a foggy memory, being "retired" from work, and not feeling as perky as they once did. Yes, they can relate to how he is feeling, but the difference is that Jacob is only 36, with four young children to take care of and the desire to be out  doing the things that people his age are doing.  If we were of the empty-nester generation his disease would still be every bit as difficult, but it wouldn't be so incongruent with the lives of our peers who are other young parents. We would have a peer group of soon to be retired people, more widows and widowers, with the prospect of declining health and abilities.

And yet, somehow it is the lives and needs of those four little people that have kept us going, that make us smile, that give Jacob the strength to push on. Being able to take care of our kids gives us each a reason to get out of bed in the morning and things to do all day, every day. Preparing their lunches, reading with them, practicing the piano with three of the four, attending sports practices and games, inviting their friends over to play, and running them around to all kinds of appointments and activities fills our days and keeps us distracted from the heavy that is this disease. So you see, facing this disease as a young family has its ups and downs. I really believe that we ALWAYS have a choice, and even in this circumstance I choose to, and have had, a wonderful life and I think Jacob and our kids would say the same thing.

Michigan

So the red eye birthday flight took us directly into our Michigan trip.
We landed in Detroit at 6:00 am after not really sleeping through the four hour trip. We got our rental car, drove to Ann Arbor, ate breakfast, parked close to the stadium and fell asleep in our car for a few hours.



The nap was just what we needed and we got going to the stadium in good time. We happened to walk in the student entrance and followed their procession into the stadium. The Michigan fans seem to be all in. Everyone is wearing the colors and gear and that giant stadium was full.

A co-worker of Jake's generously gave us his season tickets to the BYU game and we sat in a sea of Michigan fans in some great seats. It was tense at first. We were cheering as the Cougs ran on the field and the Michigan fans were cheering as their team entered and there wasn't much chatting going on.  But, sadly for us, as the game wore on and they could see that we weren't a threat, our neighbors started opening up, chatting and telling us about all the things their towns had to offer.

The game leaves nothing to speak about so I'll end there.

Luckily, we didn't go on this trip just for the game, and had the next three days to sight see around Michigan and enjoy a few days on our own.

We spent the next day in Ann Arbor and went to church, and toured around campus to get a feel for the place. It is a beautiful area and the leaves were just starting to change color and there was a nice cool undercurrent breeze in the air. Leaving 100 degree weather we were grateful for the climate change.



We drove out to Grand Haven in the afternoon, but stopped by Grand Rapids on the way. We saw the downtown and the river running through the city and got a peek at the Gerald R. Ford presidential museum. It was interesting and checked another museum off of Jacob's bucket list. He loves presidential museums and would like to see all of them, and with our last two football trips he have two more under his belt.

 

Grand Haven is a little resort like town on Lake Michigan and we stayed there in a bed and breakfast. We were the only occupants, which was a little strange, but nice to have the place to ourselves. The host was very nice and their food was amazing and it was a good change to stay in more of a home like environment.



Since we were there in the off season, it seemed like we had the town to ourselves. We spent all day Monday outside. We went on a little hike through some beautiful woods to the sand dunes near the lake. Then we went over to the pier and found a nice place to sit on the lake. We each had a book to read and spent the whole afternoon eating apples and almond butter, napping, reading, talking, and just being outside. It was amazing being by the water all day and the calming lapping of the waver were so soothing. The weather was gorgeous- overcast with the sun breaking through from 4:00-sunset. We had no plans or agenda and really and truly relaxed. We ate some amazing Mexican food that night and then packed up to leave in the morning.

Tuesday we ate breakfast and then hit the road to head back to the airport. We did a driving tour of Detroit on our way and got lunch at a highly rated deli downtown. I didn't realize that Detroit is on the Canadian border and it was nice to get a sense of that town. We made it to the airport with plenty of time (not my usual way to travel, but necessary with Jacob's medial device in tow) and enjoyed a nice plane ride home.

My mom had been here watching the kids while we were gone and we came home to cookies, fall decorations, monster hats, and some happy and well loved grandchildren. We are so grateful for her service in watching our kids and for all the things she did to make the weekend special for them so they wouldn't miss us too much.



We've always loved trips as a couple and fortunately have been able to take one a year for the last 5 or 6 years. I love being with Jacob and am grateful for the memories we made in Michigan.

My birthday

Last month I had the best birthday of my life.

Seriously.

Jake pulled out all the stops and spent weeks thinking of and doing things to make the day special and memorable. It was such a manifestation of his love and concern for me and I will always remember it.

I started out the day with a 1am airport run to pick up my Mom. Her Alleg!ant flight was delayed for 10 hours (a sad tale) but I was grateful to be with her in the early morning hours of the day and to express gratitude that she brought me into the world.

I then slept in, as I love to do, and woke up to a giant pile of presents, Rainbow donuts, and four sweet faces giving me kisses, cards, hugs and homemade presents. Birthdays with little kids are the best.







Among those presents were two treasured gifts.

First, Jake printed out my 2008 blog year into a hard copy book. It took him hours to go through each post and edit everything down and I was thrilled to have that collection of memories better preserved.

Second, Jake made me a book of letters collected from family and friends throughout my life. He secretly went through my contacts and sent out emails to everyone requesting a letter for me. I started crying when I opened it and was so touched and moved by the things I read over the next few days.



Thank you, thank you, thank you to everyone who sent something in. I was humbled by your memories, your encouraging words, your benevolence in praising my few talents, and minimizing my many flaws. I really felt that people saw me as better than I am and will treasure those letters for years to come.

 [This is Jake. I know I didn't do a thorough job because there are a lot of people who don't like to write stuff, I didn't have the correct email address, some of you forgot, etc. If you did happen to write something and would like Jordan to have it, please send it along to me or her.]

After the morning presents, the girls, my mom and I got ready to eat lunch at the American G!rl Store. A new one opened up in Scottsdale just a few weeks earlier, and the girls had been dying to check it out. My friend and I were looking for something fun to do with our girls on their fall break, and so when I called it just happened that they had their party room available for the afternoon of my birthday. So the 8 of us went and had a birthday lunch, complete with a princess chair, an outfit and prizes for the girl's American girl dolls, and a beautiful big cake.



We spent almost two hours in the party room, talking and playing games, dressing the dolls and eating a lovely two course lunch with dessert. I don't know if they usually have birthday adults at the doll store, but it sure was a fun way to celebrate with the girls I love the best, my mom, and some of our BFF friends too.



 



We got home and I took a much needed two hour nap while Tommy napped and Jake and the girls watched a movie. Then Jake and I started packing for our red eye plane ride to Michigan. We knew the the BYU v. Michigan game was that weekend, but to make both of us happy we decided to stay home for my birthday and take a red eye flight so we could still be in MI in time for the game.

I had always told Jake that I wanted to have a giant big birthday party on my actual birthday with everyone I knew and loved all eating, visiting, and hanging out together. I really don't like having all the attention on me, but get such a high out of seeing people together enjoying a good time. It truly makes me happy to see other people being happy and enjoying a date night out with friends.

I knew that there was some sort of party in the works, but was blown away when he took me to our church that night at 6:00. We arrived to find the cultural hall redecorated to host a Mexican fiesta for a multitude. I was so stunned and grateful and touched that my friends, who Jake knew to involve early on, took the reigns of the party planning and threw such an amazing party for me.

 

These wonderful women (plus AJ who could not even attend the party because she had bought Wicked tickets months before but still took a day off of work, baked a salted caramel twix cake and decorated her heart out) put together the most amazing night that I will always remember. They cooked, created decorations, organized food assignments, set up tables, worked the kitchen, bused the tables, took down tables, put up decor, took down decor, and just gave so much of their time and their talents and their efforts to help Jake give me the party I'd always dreamed of.

Honestly, I really don't think I could ask for better friends, examples, and anchors in my life. I love these girls so much.



I was also grateful to everyone who was able to come, and for those who wanted to come but were out of town, and loved being able to just work around the room talking, laughing, and being with so many people who are important in my life. It was fun to see friends who'd moved to other parts of the valley and reconnect again in person.

Our wonderful friend Jeff volunteered to DJ the night and added so much with his music, and Jake stood up and gave me such a touching tribute. Everyone sang happy birthday to me and I felt loved all the way through. Our kids even popped in for a while to see all the action and I was grateful to my mom who walked around taking pictures so I could just visit and visit.






It was like a wedding reception, because after the cleanup was underway, Jake and I had to jet home, change, grab our suitcases and race to the airport for our 11:30 pm flight to Detroit. All the way through the airport and on the plane ride I had the biggest smile on my face as I replayed the events of the day. I was as happy as I had been in a long time.



Truly, this birthday filled my cup to overflowing and I will be forever grateful to this man of mine who made it all happen for me.