This Wednesday, March 2, Jacob will be going back to the hospital to have a shunt placed in his brain to drain excess spinal fluid. In his last surgery the doctor had to open the ventricle, where spinal fluid is produced, and warned us that there would be a 50/50 chance that Jacob's brain would not be able to absorb the extra fluid and that he would need a shunt to help drain the excess spinal fluid into his stomach.
The shunt placement is only 40 minutes, but it does require intubation, a head frame for placement and will result in a full surgery and overnight hospital stay. Thankfully his mom was already planning to come to town for the week and will be here to help with the kids while we are away for a night.
As I stated a week ago, Jacob has been suffering from deficits over the last few weeks. His right side, especially his hand, arm and leg are becoming very heavy and unresponsive and he continues to have difficulty producing language. We had planned to take our kids to Disneyland, already postponing that vacation twice, and were mercifully still able to go last week. The steroid and a motorized cart helped Jake make it through our time there and he was able to enjoy the trip and make some cherished memories with our kids.
This has been a difficult month for Jacob. After each of his previous surgeries, he would have a recovery period but would then start to improve and get back to his normal self. The surgery in January has not gone that way. In fact, he seemed to be at his best immediately after surgery and then has been slowly declining in his abilities for the last four weeks following. Jacob is a man who is very present minded and his feelings follow his present condition. So the last few weeks have been difficult for him in a way he hasn't experienced to this point.
We are hopeful that the shunt will alleviate some of these symptoms and that Jake will again be able to feel better. We are so grateful for your prayers and would appreciate you praying for him in this next procedure and for a better recovery afterward.
Monday, February 29
Primary
Primary is the auxiliary organization in our church for children. During our 3 hour Sunday meetings, children spend 2 of those hours in Primary where they go to classes, sing songs, and learn about the Savior Jesus Christ.
Primary is for children ages 18 months through 11 years and the Primary theme comes from 3 Nephi 22:13, “All thy children shall be taught of the Lord; and great shall be the peace of thy children."
I have had the opportunity to serve in the Stake Primary for last three years. This weekend I was released, or relieved from my calling as a new president was called. I had the opportunity to speak in the stake conference adult session and wanted to share a few of the things I said there. I had known that I might speak and had a thought it mind, but most of what I said just came out at the moment. My only prayer was that I could say the words He would have me speak.
I started out talking about how a calling in stake primary is similar to being a grandma. You get to go and visit primaries, support the ward leaders, feel the warmth and spirit of the meetings and then head home on your merry way. You don't have the diaper changes, the nighttime feedings, the week to week work of preparing lessons that will engage and instruct children. I felt the need to express such profound gratitude for the Primary leaders, teachers, music instructors, and weekday activity leaders in each ward who give voluntarily of their time to bless the lives of these children. I have seen countless hours of service given by wonderful adults whose one goal is to teach the children they work with of the Lord.
I also expressed appreciation for the wonderful counselors and secretaries I have had the opportunity to serve with. In that time I served with five wonderful women, Susan, Noma, Linda, Laura and Kathy who were extremely capable, faithful, and willing to give of their time, especially during difficult moments in my life, to be in different ward primaries, plan activities and meetings, and support ward leaders. I love these ladies and consider their friendship one of the great blessings of my service.
I then expressed appreciation for my wonderful Jacob, who is such a rock and a support to me. There were many Sundays where he would take our 3 and then 4 kids to church alone so that I could be in a different building, nights where he took over bedtime while I was at meetings, and hours he spent talking over ideas with me. I love him and how he always supported me.
I talked about how, especially over the last two years, I had the experience of many times visiting a Primary with a wounded heart, a bereft spirit, a hopeless outlook. As I have battled Jacob's illness and its implications in my mind and heart there were many Sundays where I felt alone and comfortless. And then, often, I would enter a Primary room and almost immediately the darkness would disperse. As I looked around at the sweet children gathered to learn of Christ, as I heard them sing Primary songs, as I heard their answers to questions or simple testimonies my broken heart would be mended, my hopeless outlook would be enlightened, I would find peace in the midst of despair. I don't know exactly how it happened, but being in Primary healed me and gave my heart enough strength to carry on. I really do believe that children have an ability to help us see light, find peace, and maintain faith. Maybe that is why in Mark 10:14 the Savior said, "Suffer the little children to come unto me, and forbid them not: For of such is the kingdom of heaven."
Finally, I ended quoting the words of one of my favorite new Primary songs, I know that my Savior loves me. I explained my feeling that the whole gospel, the essential truths, are contained in the primary songs. Whether you grew up in the church or are a recent convert, if you learn and live the words of the primary songs you will make it to heaven.
Then I stated the following words as my testimony of Him.
A long time ago in a beautiful place,
Children were gathered ’round Jesus.
He blessed and taught as they felt of His love.
Each saw the tears on His face.
The love that He felt for His little ones
I know He feels for me.
I did not touch Him or sit on His knee,
Yet, Jesus is real to me.
I know He lives!
I will follow faithfully.
My heart I give to Him.
I know that my Savior loves me.
I do know that the Savior loves me and all of us and am grateful for how I felt of His love in Primary.
Friday, February 19
Ada is 6!
It turns out that the birthdays of our kids fall over four of five straight months. Three of those are within three weeks of each other, so the fall is an especially busy, happy, joyful time for our family.
Ada started off the kid birthdays in October and turned 6. She is in kindergarten and having the time of her life at school and with her friends. I don't think you could meet a sweeter kid than Ada. She has such a pleasant disposition, is easy to be entreated, and is very fun to be with. She is a peacemaker in our home, gets along with everyone, and is always doing something creative. We love and adore our amazing Ada girl.
Birthdays in our house start with presents first thing in the am. We always have the presents at the foot of our bed and meet as a family first thing in the morning to open them.
Kindergarten does birthdays right and Ada got to wear a special crown, sticker, be the line leader, and many other fun and special things on her birthday. She took in a treat to share with the class and loved being at school on her big day.
On even years our kids have birthday parties and choose their favorite dinner to eat at home. Ada's favorite: spaghetti. We ate a delicious spaghetti dinner and the had her scrumptious pink cake for dessert. Minions may have been a gift theme of hers this year.
The next day Jake was able to go in and help with her class party and Tommy and I met them all for lunch in the school cafeteria. We love our kid's school (and their teachers) so much and are grateful for the time we can spend with them during the school day.
The Friday after her birthday it was a day off of school and so we took advantage and had her birthday party at a nearby park. Ada really really wanted to rent a blow up with a slide and this one did not disappoint. Unfortunately, her parents did not get a park permit and were caught by a park ranger and her mother spent a frantic hour racing around town to buy a stupid $15 permit and was an hour late to the party.....Things ended well and food came and cake was eaten and the kids seemed to be none the wiser.
She wanted to invite her whole kindergarten class, friends from church, and some longtime friends and we ended up with a great fun group of kids. They were back and forth from the park equipment to the blow up slide for two hours, and for extra fun since her birthday is so near to Halloween we invited all the kids to come in their costumes. It seemed to make for the perfect kid friendly afternoon.
Jake was ever the cool calm and collected one of the group and kept things together when I was about to lose it over the permit. He was the only man at the party but can hang with the womenfolk.
Ada was completely spoiled and left with a hamper overflowing with presents. It made for one happy girl and we were go grateful to everyone who was so generous with her. She lived off her party high for days and days and we were so happy to help make her 6th birthday a memorable one.
We'll love you forever Ada Claire. Happy birthday to you!
Wednesday, February 17
The last few weeks
I feel like I write an update pretty often and then notice that another few weeks have gone by. So here's the latest.
Jake is feeling ok, but over the last week has had some hard days with increasing weakness on his right side and language difficulties/aphasia. I contacted his doctor's office today and spoke with my favorite nurse. She thinks the changes are consistent with swelling effect, and so Jake will go back on the steroid for a week long mini-taper.
We aren't big fans of the steroid. But after talking to him tonight he feels that if the steroid can help him function better than it is worth it. It is hard to make these decisions when we always don't know what the best thing is, but if the medicine can be helpful and improve his functioning then he wants to try it for a while.
Jake also started wearing the Optune treatment (Novocure TTF or scalpie) again on Monday night. It was nice for him to have a three week break, especially because he had worn it 90 percent of the time since July. It really isn't too intrusive in his day to day functioning and by now most of the people we associate with are used to seeing him with it.
In fact, we sometimes forget that it looks unusual. I'll often find people at stores taking a second glance at him and wonder what they are looking at, and then realize that they're curious about what he is wearing. People are very discreet though and only two or three times have we even had someone ask him what it is. Only a handful of people have recognized it too, so it's definitely a new thing.
I tell him he is a champion for Optune wearers of the future as he is out and about and creating exposure and awareness for at least the people he sees in his days.
I also wanted to comment favorably on our Downt*wn Abbey-like helpers. My mom was here with us for 10 days, and then my sister followed a few days later for 5 days and they were the downstairs help I've always wanted.
They especially lightened the load for me by doing all dishes, laundry, cooking, shopping, kid shuttling and all of the other tasks of running our household. I really was able to rest and just take care of Jake and was grateful to have their help. I got sick at the end of my mom's visit and was in bed for 24 hours and was especially grateful that she was here to keep everything together.
I could not ask for a more helpful, loving, or self-sacrificing mother and sister and love them both so much for all that they did (and their husbands who encouraged them to them come) to take care of me, Jake and our family.
We have been on our own this week, and while at first I was a little nervous things have been ok. We were left with things in such good condition that I haven't had to play catch up and have mostly been able to maintain what needs to be done.
I must also comment about all of our dear Phoenix friends who have helped us in a million different ways. Sometimes I feel so guilty that we have just had to take and take over the last two years, but at the same time am overwhelmed with the good people who continue to give and give and give to help us through this. There really is nothing better than a supportive community of friends and we have been so blessed to be surrounded by some of the best.
Things are progressing with our house. I've de-junked most of the rooms and am just left with our desk papers and some bins of our childhood things. We have some interior repairs underway and are looking to get cleaning seriously next month. Though it seems crazy to move when our life is so up in the air, it really is a blessing in disguise because it gives me something tangible to do and to set my mind to each day. I am a planner, it is my nature and disposition, and having something to plan for over the next few months is an especially welcome relief.
I think that is it for now. Thank you to everyone who stays mindful of us. Thank you for keeping Jake in your prayers. Thank you for the kind things you do for our family. I see Heavenly Father working through you and am grateful that His grace is so plentifully manifest through the goodness of those around us.
Jake is feeling ok, but over the last week has had some hard days with increasing weakness on his right side and language difficulties/aphasia. I contacted his doctor's office today and spoke with my favorite nurse. She thinks the changes are consistent with swelling effect, and so Jake will go back on the steroid for a week long mini-taper.
We aren't big fans of the steroid. But after talking to him tonight he feels that if the steroid can help him function better than it is worth it. It is hard to make these decisions when we always don't know what the best thing is, but if the medicine can be helpful and improve his functioning then he wants to try it for a while.
Jake also started wearing the Optune treatment (Novocure TTF or scalpie) again on Monday night. It was nice for him to have a three week break, especially because he had worn it 90 percent of the time since July. It really isn't too intrusive in his day to day functioning and by now most of the people we associate with are used to seeing him with it.
In fact, we sometimes forget that it looks unusual. I'll often find people at stores taking a second glance at him and wonder what they are looking at, and then realize that they're curious about what he is wearing. People are very discreet though and only two or three times have we even had someone ask him what it is. Only a handful of people have recognized it too, so it's definitely a new thing.
I tell him he is a champion for Optune wearers of the future as he is out and about and creating exposure and awareness for at least the people he sees in his days.
I also wanted to comment favorably on our Downt*wn Abbey-like helpers. My mom was here with us for 10 days, and then my sister followed a few days later for 5 days and they were the downstairs help I've always wanted.
They especially lightened the load for me by doing all dishes, laundry, cooking, shopping, kid shuttling and all of the other tasks of running our household. I really was able to rest and just take care of Jake and was grateful to have their help. I got sick at the end of my mom's visit and was in bed for 24 hours and was especially grateful that she was here to keep everything together.
I could not ask for a more helpful, loving, or self-sacrificing mother and sister and love them both so much for all that they did (and their husbands who encouraged them to them come) to take care of me, Jake and our family.
We have been on our own this week, and while at first I was a little nervous things have been ok. We were left with things in such good condition that I haven't had to play catch up and have mostly been able to maintain what needs to be done.
I must also comment about all of our dear Phoenix friends who have helped us in a million different ways. Sometimes I feel so guilty that we have just had to take and take over the last two years, but at the same time am overwhelmed with the good people who continue to give and give and give to help us through this. There really is nothing better than a supportive community of friends and we have been so blessed to be surrounded by some of the best.
Things are progressing with our house. I've de-junked most of the rooms and am just left with our desk papers and some bins of our childhood things. We have some interior repairs underway and are looking to get cleaning seriously next month. Though it seems crazy to move when our life is so up in the air, it really is a blessing in disguise because it gives me something tangible to do and to set my mind to each day. I am a planner, it is my nature and disposition, and having something to plan for over the next few months is an especially welcome relief.
I think that is it for now. Thank you to everyone who stays mindful of us. Thank you for keeping Jake in your prayers. Thank you for the kind things you do for our family. I see Heavenly Father working through you and am grateful that His grace is so plentifully manifest through the goodness of those around us.
Nebraska and New Mexico
Jake decided a long time ago that when our kids turned 8 (the year they get baptized) that he'd take each child on a special road trip to a BYU game. So this year it was Ellie's turn and her trip didn't disappoint.
So back in September she and Jake loaded up on the plane and flew to Nebraska for the amazing BYU v. Nebraska game, where they won with an amazing Hail Mary pass and catch with one second remaining in the game.
They met up with my parents who were going to the same game and had a great weekend trip with them. In addition to football, they visited three states, took a church history tour of the Midwest and saw the Winter Quarters temple as well as the Nauvoo temple and historic city.
Ellie had her own camera for the trip and I love the pictures she captured of the things they saw and did. Both she and Jake really enjoyed their time together and were so glad to be able to make this memorable trip.
Meanwhile, the other kids and I decided to take a trip that same weekend to see my sister and her family in New Mexico. We love visiting their cool town and treated ourselves to a tea party, a visit to the temple, shopping for crafts, park visits, and some good times together. It was a good weekend all around.
So back in September she and Jake loaded up on the plane and flew to Nebraska for the amazing BYU v. Nebraska game, where they won with an amazing Hail Mary pass and catch with one second remaining in the game.
They met up with my parents who were going to the same game and had a great weekend trip with them. In addition to football, they visited three states, took a church history tour of the Midwest and saw the Winter Quarters temple as well as the Nauvoo temple and historic city.
Ellie had her own camera for the trip and I love the pictures she captured of the things they saw and did. Both she and Jake really enjoyed their time together and were so glad to be able to make this memorable trip.
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| The flight over |
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| Their night time accommodations |
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| The view from the car windows |
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| Dad and daughter |
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| With my parents |
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| At the game |
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| True Blue Cougar fans |
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| Selfie |
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| A cool bridge |
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| The door to the Winter Quarter's temple |
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| The Winter Quarter's temple |
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| Nebraska state capitol in Lincoln |
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| More views while driving |
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| In a replica of the store of Nauvoo |
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| Ellie's rag doll prize to remember her trip |
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| At the Nauvoo temple |
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| A side view of the temple |
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| A statue of the pioneers who sacrificed for their faith |
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| Daddy and daughter |
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| Ellie B. |
Meanwhile, the other kids and I decided to take a trip that same weekend to see my sister and her family in New Mexico. We love visiting their cool town and treated ourselves to a tea party, a visit to the temple, shopping for crafts, park visits, and some good times together. It was a good weekend all around.
Tuesday, February 2
A report
Time flies when you are taking it easy.
Jake came home from the hospital on Friday afternoon and has had a lot of time to sleep, rest, and recover. He has been able to walk around the neighborhood and feels his energy increasing. Thankfully, his itching seems to be subsiding. He still has difficulty producing words, but says that his own thoughts are much more clear and discernible than before the surgery. He was kind of beat up during the operation, with painful bruising on both of his arms (Avastin makes bruising worse) and some lumps on his head but that should continue to improve as the days go by.
We have both been able to sleep and sleep and sleep thanks in large part to our parents assuming our tasks and kids. Getting rest after such an ordeal has been critical and restorative. We have an appointment to see Jake's surgeon and oncologist next week and will know more about a plan from there. Until then it is nice to be in recovery mode.
The future is still uncertain, but we both feel that the surgery was a good decision and will provide more positive than negative benefits. I remember being concerned that Jake would wake up from the surgery maimed in some way, and am especially grateful that he is no worse off than when he went in.
His parents were here until Sunday morning and my mom will able to stay with us for the rest of the week. I definitely feel like I've been in the best place emotionally and physically after this surgery than any other because of the help and support I've had in my responsibilities. We are so grateful for our parents and their help.
We continue to pray for Jake. That his body will heal. That the swelling will subside. That he will recover his speech. That the tumor cells will not divide. Mostly we are just grateful to know that Heavenly Father is there to listen and that He continues to give us what we need.
And since there's not enough fun in this mix we have decided to move to Utah, specifically to Provo, at the end of May. We have been discussing this for the last many months, and know that it is the right thing to do for our children, although our hearts break at the thought of leaving our home, our life, and our dear friends in Phoenix.
So over the next four months we are going to dejunk, organize, clean, and pack up our belongings for the big move.
Thankfully it gives us something concrete to do and to occupy our minds with each day.
We appreciate everyone who continues to be mindful of us.
Thank you.
Your love, prayers, service, kindness, and concern make all the difference for us and for our children.
Jake came home from the hospital on Friday afternoon and has had a lot of time to sleep, rest, and recover. He has been able to walk around the neighborhood and feels his energy increasing. Thankfully, his itching seems to be subsiding. He still has difficulty producing words, but says that his own thoughts are much more clear and discernible than before the surgery. He was kind of beat up during the operation, with painful bruising on both of his arms (Avastin makes bruising worse) and some lumps on his head but that should continue to improve as the days go by.
We have both been able to sleep and sleep and sleep thanks in large part to our parents assuming our tasks and kids. Getting rest after such an ordeal has been critical and restorative. We have an appointment to see Jake's surgeon and oncologist next week and will know more about a plan from there. Until then it is nice to be in recovery mode.
The future is still uncertain, but we both feel that the surgery was a good decision and will provide more positive than negative benefits. I remember being concerned that Jake would wake up from the surgery maimed in some way, and am especially grateful that he is no worse off than when he went in.
His parents were here until Sunday morning and my mom will able to stay with us for the rest of the week. I definitely feel like I've been in the best place emotionally and physically after this surgery than any other because of the help and support I've had in my responsibilities. We are so grateful for our parents and their help.
We continue to pray for Jake. That his body will heal. That the swelling will subside. That he will recover his speech. That the tumor cells will not divide. Mostly we are just grateful to know that Heavenly Father is there to listen and that He continues to give us what we need.
And since there's not enough fun in this mix we have decided to move to Utah, specifically to Provo, at the end of May. We have been discussing this for the last many months, and know that it is the right thing to do for our children, although our hearts break at the thought of leaving our home, our life, and our dear friends in Phoenix.
So over the next four months we are going to dejunk, organize, clean, and pack up our belongings for the big move.
Thankfully it gives us something concrete to do and to occupy our minds with each day.
We appreciate everyone who continues to be mindful of us.
Thank you.
Your love, prayers, service, kindness, and concern make all the difference for us and for our children.
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