Prayers for Nephew
- Thread starter MGMIAM
- Start date
After watching the courage of this young man and his struggle we should be ashamed at some of the things we complain about !
Bill Norris
Back in the Day
Prayers he will continue on this recovery road. There is no limit to God's healing. We've all seen it many times and it will continue here.
MGMIAM
Gold $$ Contributor
It’s hard to believe it has been a week already since we got home from the hospital! It’s kind of been a whirlwind with a new kitty, school, medicines and doctor’s visits. We are so incredibly thankful that Jedi has been feeling better this last week! His numbers have been stable, and overall he is tolerating this round of chemo much better than the last. Truly all praise to the Lord for His provision! It is so heartwarming to see our little sunshine boy smiling, playing and chatting again Through this journey we have really learned to just live in the moment and be truly thankful for the good ones.
Some new developments in the last week include Jedi’s hair falling out and some numbness in his fingertips. Jedi didn’t really care about his hair falling out, but it became a nuisance, so he opted for a close buzz cut. His dad, brothers, uncle and cousin all followed suit and got their heads shaved as well. It is so cute to see them all supporting Jedi in this way (see the pic). The numbness is “just weird” according to Jedi and it doesn’t seem to hinder him in any way, so we’ll pray it stays this way and resolves after chemo is over.
Since he has been feeling better, Jedi started virtual school when he is able. It is so sweet to see his classmates and teacher’s reactions when he signs into class. They are so supportive and really lift Jedi’s spirits!
We have an appointment to see the pediatric nephrologist from Madison children’s hospital on Thursday. She is the one consulting on his blood pressure issues, so it will be good to meet her in person and ask her some questions. Also on that day we will recheck Jedi’s labs and if they are good we can stop the Neupogen shots for this round. Jedi (and I) will certainly be happy if that’s the case. He’s gotten much better at tolerating the pain from the shots, but less shots would certainly be welcome I’ve also noticed that his lines seem to be working better overall (flushing and blood return), so I’m praying that the blood clot is getting smaller as well. We see cardiology in two weeks for an echo so we’ll see then
I received a call from Jedi’s oncology doctor this afternoon updating us on a new timeline for transplant. It was uplifting to be talking about tentative dates for evaluation in Madison and transplant date. The current plan is for chemo in clinic next week, all the evaluation tests the following week, and admission to Madison the week after that. We are praying so hard for completely clear scans and bone marrow. Our God is greater than cancer and we ask (as our sweet sister says) “that God would put all His power in heaven and on earth into Jedi’s chemo so he can be in complete remission”!
Some days I just sit in awe of God’s goodness and provision through this journey. The following song has been one of my favorites for a while, and I hope the words lift your spirits as well
“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”
2 Corinthians 12:9 NIV
Your Grace Still Amazes Me
My faithful Father, enduring friend
Your tender mercy's like a river with no end
It overwhelms me, covers my sin
Each time I come into your presence I stand in wonder once again
Oh patient savior, You make me whole
You are the author and the healer of my soul
What can I give You, Lord what can I say
I know there's no way to repay You only to offer You my praise
Your grace still amazes me
Your love is still a mystery
Each day I fall on my knees
'Cause Your grace still amazes me
Your grace still amazes me
It's deeper, it's wider, it's stronger, it's higher
It's deeper, it's wider, it's stronger, it's higher
Than anything my eyes can see
Your grace still amazes me
Your love is still a mystery
Each day I fall on my knees
'Cause your grace still amazes me
Your grace still amazes me
“And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.” 1 Peter 5:10 NIV
We are truly thankful for all of your prayers, encouragement and love. Please keep them coming! Love to you all from the Schallers
Some new developments in the last week include Jedi’s hair falling out and some numbness in his fingertips. Jedi didn’t really care about his hair falling out, but it became a nuisance, so he opted for a close buzz cut. His dad, brothers, uncle and cousin all followed suit and got their heads shaved as well. It is so cute to see them all supporting Jedi in this way (see the pic). The numbness is “just weird” according to Jedi and it doesn’t seem to hinder him in any way, so we’ll pray it stays this way and resolves after chemo is over.
Since he has been feeling better, Jedi started virtual school when he is able. It is so sweet to see his classmates and teacher’s reactions when he signs into class. They are so supportive and really lift Jedi’s spirits!
We have an appointment to see the pediatric nephrologist from Madison children’s hospital on Thursday. She is the one consulting on his blood pressure issues, so it will be good to meet her in person and ask her some questions. Also on that day we will recheck Jedi’s labs and if they are good we can stop the Neupogen shots for this round. Jedi (and I) will certainly be happy if that’s the case. He’s gotten much better at tolerating the pain from the shots, but less shots would certainly be welcome I’ve also noticed that his lines seem to be working better overall (flushing and blood return), so I’m praying that the blood clot is getting smaller as well. We see cardiology in two weeks for an echo so we’ll see then
I received a call from Jedi’s oncology doctor this afternoon updating us on a new timeline for transplant. It was uplifting to be talking about tentative dates for evaluation in Madison and transplant date. The current plan is for chemo in clinic next week, all the evaluation tests the following week, and admission to Madison the week after that. We are praying so hard for completely clear scans and bone marrow. Our God is greater than cancer and we ask (as our sweet sister says) “that God would put all His power in heaven and on earth into Jedi’s chemo so he can be in complete remission”!
Some days I just sit in awe of God’s goodness and provision through this journey. The following song has been one of my favorites for a while, and I hope the words lift your spirits as well
“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”
2 Corinthians 12:9 NIV
Your Grace Still Amazes Me
My faithful Father, enduring friend
Your tender mercy's like a river with no end
It overwhelms me, covers my sin
Each time I come into your presence I stand in wonder once again
Oh patient savior, You make me whole
You are the author and the healer of my soul
What can I give You, Lord what can I say
I know there's no way to repay You only to offer You my praise
Your grace still amazes me
Your love is still a mystery
Each day I fall on my knees
'Cause Your grace still amazes me
Your grace still amazes me
It's deeper, it's wider, it's stronger, it's higher
It's deeper, it's wider, it's stronger, it's higher
Than anything my eyes can see
Your grace still amazes me
Your love is still a mystery
Each day I fall on my knees
'Cause your grace still amazes me
Your grace still amazes me
We are truly thankful for all of your prayers, encouragement and love. Please keep them coming! Love to you all from the Schallers
So happy to hear see his latest progress. Our prayers will continue.
MGMIAM
Gold $$ Contributor
Good evening to our Jedi’s Journey family! Since our last update we had a clinic visit with the nephrologist and another visit for labs. The nephrologist did a very good job explaining that something (we probably never will know what exactly) happened to cause Jedi to lose kidney function and when that happened his blood pressure went up. Good news is that his kidney function seems to be normalizing, so she wants to decrease his medication for two weeks and see how his blood pressure looks. So far so good; it’s staying within normal limits on the new dose. We will check in with her in two weeks to decide next steps. Jedi’s lab work was good enough to stop the Neupogen shots for this round. He was happy to hear that. We had to restart a different medicine though because his uric acid level increased slightly. All of this is a delicate balance that God has completely under control; even if I don’t understand why. He doesn’t expect me to understand everything, but to trust in Him with all my heart. When I submit to Him then He will make my paths straight. I pray this truth from Proverbs into my heart!
Jedi has been feeling well enough in the mornings to sign on with his class and participate in some subjects. I’m thankful for this connection to his teacher and his friends, and he is as well.
Today we celebrated Elijah’s golden birthday! Yes, we have yet another teenager and have officially crossed over to the “teen majority” in our house. We spent the day cruising around on a pontoon with Isaiah as our captain and Jedi learning the ropes. Jedi has a whole list of things he wants to do and driving a pontoon was on the list! So thankful he was able to accomplish that goal today.
Tomorrow begins chemo week again. We will be spending a lot of time in the clinic and praying all goes well so we can go home in the evenings. I will update more as the week progresses.
I must confess that as we get closer to the “evaluation week” I have had more feelings of anxiety. It’s in these times that I am especially thankful for God’s grace and for the community He has blessed us with. I read a devotion recently on community and I can certainly relate with what the author writes; especially the last line...
We are so incredibly thankful for our community of believers who lift us up even when we are weak. Thank you all for that...it is truly the greatest gift you could give us right now!
Some men came carrying a paralyzed man on a sleeping mat. They tried to take him inside to Jesus, but they couldn’t reach him because of the crowd. So they went up to the roof and took off some tiles. Then they lowered the sick man on his mat down into the crowd, right in front of Jesus. Seeing their faith, Jesus said to the man, “Young man, your sins are forgiven.” (Luke 5: 18-20)
As we break down Luke 5:18-20, we see that our God-given community can be instruments of healing in many ways:
Jedi has been feeling well enough in the mornings to sign on with his class and participate in some subjects. I’m thankful for this connection to his teacher and his friends, and he is as well.
Today we celebrated Elijah’s golden birthday! Yes, we have yet another teenager and have officially crossed over to the “teen majority” in our house. We spent the day cruising around on a pontoon with Isaiah as our captain and Jedi learning the ropes. Jedi has a whole list of things he wants to do and driving a pontoon was on the list! So thankful he was able to accomplish that goal today.
Tomorrow begins chemo week again. We will be spending a lot of time in the clinic and praying all goes well so we can go home in the evenings. I will update more as the week progresses.
I must confess that as we get closer to the “evaluation week” I have had more feelings of anxiety. It’s in these times that I am especially thankful for God’s grace and for the community He has blessed us with. I read a devotion recently on community and I can certainly relate with what the author writes; especially the last line...
We are so incredibly thankful for our community of believers who lift us up even when we are weak. Thank you all for that...it is truly the greatest gift you could give us right now!
Some men came carrying a paralyzed man on a sleeping mat. They tried to take him inside to Jesus, but they couldn’t reach him because of the crowd. So they went up to the roof and took off some tiles. Then they lowered the sick man on his mat down into the crowd, right in front of Jesus. Seeing their faith, Jesus said to the man, “Young man, your sins are forgiven.” (Luke 5: 18-20)
As we break down Luke 5:18-20, we see that our God-given community can be instruments of healing in many ways:
- Your community will carry you physically and spiritually. (‘some men came carrying’)
- Your community will push you towards Jesus no matter the cost. (‘they went up to the roof’)
- Your community will remove any obstacles that are blocking your access to Jesus. (‘removed some tiles’)
- Your community will love you with faith and prayer so that even when your faith is weak, their united faith concerning you remains strong and visible! (‘seeing their faith’)
MGMIAM
Gold $$ Contributor
MGMIAM
Gold $$ Contributor
Lord I Need You
Journal Entry by Dianna Schaller — 39 minutes ago
Praise the Lord we made it through round 3 of chemo this week! Jedi has been doing really good overall, and we give all glory to the Lord for his progress! It was an incredibly long day on Monday with all his infusions. Then on Tuesday I got the “schedule” for the next two weeks. I was excited to see all the plans being made for scans and pre-transplant testing, but it really hit me that we still have such a long road ahead of us. I took a long hike by myself that evening to just pray and cry and listen to music. I’m so thankful for that time alone with the Lord, and the time to be in nature and recharge.
Now, about that schedule...tomorrow we go for a recheck of Jedi’s labs. We are praying that they haven’t dropped too far. He started out the week with a low ANC, so praying that the Neupogen does its job and brings that back up. He has quite the “pill burden” as the kidney doctor stated and that increases more during chemo weeks. When I tell him it’s medicine time he usually sighs, and sometimes I get an eye roll, but he is so good about taking them. I’m really impressed and incredibly grateful that he is a trooper in that area. Please pray for the increase in injections again.
Next week Monday morning he has labs, dressing change and a PET scan. After that we meet with the doctor for results. We are praying so hard for remission, and hope that is part of God’s plan! That afternoon we travel to Onalaska for a CT scan of sinuses, chest, abdomen and pelvis. This is pre-transplant to check for any fungal infection, etc. Tuesday morning we are back in La Crosse for the bone marrow biopsy. Praying that is clear of cancer! Wednesday we will travel to Madison to meet with the BMT doctor and the BMT coordinator. They will give us much more detail about the timeline, the actual preparative treatment, and a tour of the BMT unit. Thursday we are back in LaCrosse for a renogram (more in-depth kidney function test). This is also pre-transplant evaluation (thank the Lord his kidneys have been functioning normal).
We were just informed yesterday that there is a bit of a scheduling issue with the bone marrow donation, and because of that we are looking at a mid-October admission to Madison instead of end of September. This was disheartening to hear as it pushes the timeline back, and it also means Jedi will need another round of chemotherapy here. He is tolerating it well, but he is starting to have some minor side effects that could get worse with more rounds. We keep reminding ourselves that it will happen in God’s perfect timing, and that lifts a huge burden off our shoulders.
In the last few weeks we have seen more of the sweet, smiling Jedi that we all know and love! He is able to ride the UTV, go a little farther on walks, fight swords with Micah, play yard games, and do more schooling. We have so much to be thankful for, and we keep praying that these blessings continue
Regardless of the ups and downs, we always need to keep the connection open with our Lord. Often I find myself singing, “Lord, I need you!”
"Lord, I Need You"
Lord, I come, I confess
Bowing here I find my rest
Without You I fall apart
You're the One that guides my heart
Where sin runs deep Your grace is more
Where grace is found is where You are
Where You are, Lord, I am free
Holiness is Christ in me
So teach my song to rise to You
When temptation comes my way
When I cannot stand I'll fall on You
Jesus, You're my hope and stay
Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You
We can’t thank you all enough for your prayers, your cards, your encouragement and your love. God’s Love is truly evident in all of you!
Journal Entry by Dianna Schaller — 39 minutes ago
Praise the Lord we made it through round 3 of chemo this week! Jedi has been doing really good overall, and we give all glory to the Lord for his progress! It was an incredibly long day on Monday with all his infusions. Then on Tuesday I got the “schedule” for the next two weeks. I was excited to see all the plans being made for scans and pre-transplant testing, but it really hit me that we still have such a long road ahead of us. I took a long hike by myself that evening to just pray and cry and listen to music. I’m so thankful for that time alone with the Lord, and the time to be in nature and recharge.
Now, about that schedule...tomorrow we go for a recheck of Jedi’s labs. We are praying that they haven’t dropped too far. He started out the week with a low ANC, so praying that the Neupogen does its job and brings that back up. He has quite the “pill burden” as the kidney doctor stated and that increases more during chemo weeks. When I tell him it’s medicine time he usually sighs, and sometimes I get an eye roll, but he is so good about taking them. I’m really impressed and incredibly grateful that he is a trooper in that area. Please pray for the increase in injections again.
Next week Monday morning he has labs, dressing change and a PET scan. After that we meet with the doctor for results. We are praying so hard for remission, and hope that is part of God’s plan! That afternoon we travel to Onalaska for a CT scan of sinuses, chest, abdomen and pelvis. This is pre-transplant to check for any fungal infection, etc. Tuesday morning we are back in La Crosse for the bone marrow biopsy. Praying that is clear of cancer! Wednesday we will travel to Madison to meet with the BMT doctor and the BMT coordinator. They will give us much more detail about the timeline, the actual preparative treatment, and a tour of the BMT unit. Thursday we are back in LaCrosse for a renogram (more in-depth kidney function test). This is also pre-transplant evaluation (thank the Lord his kidneys have been functioning normal).
We were just informed yesterday that there is a bit of a scheduling issue with the bone marrow donation, and because of that we are looking at a mid-October admission to Madison instead of end of September. This was disheartening to hear as it pushes the timeline back, and it also means Jedi will need another round of chemotherapy here. He is tolerating it well, but he is starting to have some minor side effects that could get worse with more rounds. We keep reminding ourselves that it will happen in God’s perfect timing, and that lifts a huge burden off our shoulders.
In the last few weeks we have seen more of the sweet, smiling Jedi that we all know and love! He is able to ride the UTV, go a little farther on walks, fight swords with Micah, play yard games, and do more schooling. We have so much to be thankful for, and we keep praying that these blessings continue
Regardless of the ups and downs, we always need to keep the connection open with our Lord. Often I find myself singing, “Lord, I need you!”
"Lord, I Need You"
Lord, I come, I confess
Bowing here I find my rest
Without You I fall apart
You're the One that guides my heart
Where sin runs deep Your grace is more
Where grace is found is where You are
Where You are, Lord, I am free
Holiness is Christ in me
So teach my song to rise to You
When temptation comes my way
When I cannot stand I'll fall on You
Jesus, You're my hope and stay
Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You
MGMIAM
Gold $$ Contributor
This was probably the sweetest thing I’ve seen in a while. ...
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A cheeseburger and the healing garden made for a nice lunch ...
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He loves his new Optimus Prime. It takes 35 steps to transform ...
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He bought Micah a birthday present
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Learning magic tricks
MGMIAM
Gold $$ Contributor
Praise God from whom all blessings flow
Journal Entry by Dianna Schaller — 7 hours ago
“I will praise God’s name in song and glorify him with thanksgiving.” Psalms 69:30
Please join us in praising our almighty God for answering our prayers with great scan results for Jedi!
Our day started out with tears, because Jedi really didn’t want to be gone all day getting scans, sitting by himself, and not being able to eat. By the time we got to the clinic, though, he had worked it out and was ready to go. He got his labs drawn, his dressing changed and then we headed downstairs to the PET scan. He got nestled into his recliner with pillows all around, got his radioactive sugar, and began the 40 minutes of alone time (this is the worst part for him because he loves to be around people). I kept myself busy for an hour by walking, getting coffee, praying a ton and talking with a dear friend.
After the scan, we waited for Patrick (he had a meeting) to get to the clinic before we got the results. Jedi’s doctor was so excited to tell us that the scan looked great! No concerning areas were lighting up; especially in his abdomen where the cancer was concentrated before. His bone marrow did light up quite a bit, but she said that will happen as a result of the Neupogen shots. We will confirm that tomorrow with his bone marrow biopsy. If all looks good, we will complete another round of chemo next week along with his CT scans that got rescheduled. Our appointment to meet with the transplant doctor in Madison will be rescheduled closer to our admission date. We don’t have the actual appointment date, but we are thinking potentially two weeks from now.
Another area of thankfulness is that Jedi’s labs are holding steady. Because of this we are able to reduce some of his medications. He is certainly thankful for less pills!
Please help us pray that all goes well with Jedi’s biopsy tomorrow as well as his kidney test and labs on Thursday.
We can’t thank you, our loving community, enough for the support you have given us. We have prayed together, cried together and rejoiced together. Today is certainly a day for rejoicing! “The Lord has done it this very day; let us rejoice today and be glad.” Psalms 118:24
From Whom All Blessings Flow
What gift of love could I offer to a King
What weight or worth could be held within my offering
When He alone is worthy
A glory song is inscribed upon my heart
This treasure held in an alabaster jar I break
To bring Him all the glory
Praise God from whom all blessings flow
Praise Him all creatures here below
What sacrifice could be equal to His own
The cross of Christ has declared that there is nought I owe
Yet I know I owe Him all
Praise God from whom all blessings flow
Praise Him all creatures here below
Praise God from whom all blessings flow
Our Father God the infinite
The matchless King magnificent
The living Christ
The servant Son
The prophesied
The saving One
The Holy Ghost gift from above
The faithful Friend
The seal of love
This life, this heart
This song to Him
My all in all
My everything
Praise God from whom all blessings flow
Praise Him all creatures here below
Praise Him above ye heavenly hosts
Praise Father Son and Holy Ghost
Journal Entry by Dianna Schaller — 7 hours ago
“I will praise God’s name in song and glorify him with thanksgiving.” Psalms 69:30
Please join us in praising our almighty God for answering our prayers with great scan results for Jedi!
Our day started out with tears, because Jedi really didn’t want to be gone all day getting scans, sitting by himself, and not being able to eat. By the time we got to the clinic, though, he had worked it out and was ready to go. He got his labs drawn, his dressing changed and then we headed downstairs to the PET scan. He got nestled into his recliner with pillows all around, got his radioactive sugar, and began the 40 minutes of alone time (this is the worst part for him because he loves to be around people). I kept myself busy for an hour by walking, getting coffee, praying a ton and talking with a dear friend.
After the scan, we waited for Patrick (he had a meeting) to get to the clinic before we got the results. Jedi’s doctor was so excited to tell us that the scan looked great! No concerning areas were lighting up; especially in his abdomen where the cancer was concentrated before. His bone marrow did light up quite a bit, but she said that will happen as a result of the Neupogen shots. We will confirm that tomorrow with his bone marrow biopsy. If all looks good, we will complete another round of chemo next week along with his CT scans that got rescheduled. Our appointment to meet with the transplant doctor in Madison will be rescheduled closer to our admission date. We don’t have the actual appointment date, but we are thinking potentially two weeks from now.
Another area of thankfulness is that Jedi’s labs are holding steady. Because of this we are able to reduce some of his medications. He is certainly thankful for less pills!
Please help us pray that all goes well with Jedi’s biopsy tomorrow as well as his kidney test and labs on Thursday.
We can’t thank you, our loving community, enough for the support you have given us. We have prayed together, cried together and rejoiced together. Today is certainly a day for rejoicing! “The Lord has done it this very day; let us rejoice today and be glad.” Psalms 118:24
From Whom All Blessings Flow
What gift of love could I offer to a King
What weight or worth could be held within my offering
When He alone is worthy
A glory song is inscribed upon my heart
This treasure held in an alabaster jar I break
To bring Him all the glory
Praise God from whom all blessings flow
Praise Him all creatures here below
What sacrifice could be equal to His own
The cross of Christ has declared that there is nought I owe
Yet I know I owe Him all
Praise God from whom all blessings flow
Praise Him all creatures here below
Praise God from whom all blessings flow
Our Father God the infinite
The matchless King magnificent
The living Christ
The servant Son
The prophesied
The saving One
The Holy Ghost gift from above
The faithful Friend
The seal of love
This life, this heart
This song to Him
My all in all
My everything
Praise God from whom all blessings flow
Praise Him all creatures here below
Praise Him above ye heavenly hosts
Praise Father Son and Holy Ghost
MGMIAM
Gold $$ Contributor
Yesterday ● 5 items
Brothers gotta hug! These two are so cute together. Jedi’s a ...
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This kid is a good driver
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Taking mom and dad on a ride
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Eggs and bacon for low carb day prior to his PET scan
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Bro time playing a game together
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September 17, 2020 ● 5 items
This was probably the sweetest thing I’ve seen in a while. ...
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A cheeseburger and the healing garden made for a nice lunch ...
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He loves his new Optimus Prime. It takes 35 steps to transform ...
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He bought Micah a birthday present
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Learning magic tricks
Brothers gotta hug! These two are so cute together. Jedi’s a ...
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This kid is a good driver
Add a comment
Taking mom and dad on a ride
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Eggs and bacon for low carb day prior to his PET scan
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Bro time playing a game together
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September 17, 2020 ● 5 items
This was probably the sweetest thing I’ve seen in a while. ...
Add a comment
A cheeseburger and the healing garden made for a nice lunch ...
Add a comment
He loves his new Optimus Prime. It takes 35 steps to transform ...
Add a comment
He bought Micah a birthday present
Add a comment
Learning magic tricks
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