Prayers for Nephew
- Thread starter MGMIAM
- Start date
MGMIAM
Gold $$ Contributor
“See you in a little bit”
Journal entry by Dianna Schaller — 6 hours ago
When Jedi was heading into surgery and other procedures there came a point when we had to part ways. When we got to that point we would give him hugs and kisses and with as much gusto as we could muster we would say, “See you in a little bit!” Since he would soon be under anesthesia it really felt like a “little bit” to him.
Today we had to say that again except this time to Jedi’s oldest brother, Noah. He is off to boot camp for 10 weeks. I know once he gets there he will be super busy, so my hope is that it will seem like a “little bit” that we are apart. Please pray for him during his training.
Jedi has been doing well overall. He continues to go out for walks three times a day. Yesterday he even rode his bike for a bit! We continue to encourage lots of fluids, but that remains a struggle as he “feels full of liquids” as he puts it
Everyone who knows Jedi is very familiar with his love of guinea pigs. Noah had been searching for a piggie to get for Jedi before he left for boot camp. Two days ago we welcomed Mocha into our family. He is a timid, cute, multicolored American short-haired guinea pig. Jedi is so excited as you can see by his smile in the picture.
I received a call today from the bone marrow transplant coordinator in Madison. We have an appointment to meet with the team next week. She informed me that after reviewing the boys’ blood typing against Jedi’s the closest match was only 9/10. She said they need a perfect 10/10 match, so they will need to review Patrick’s and my blood typing to see how Jedi got his, and then she will go to the National bone marrow donor registry to pursue a match. I have to admit this was kind of a hard blow for me. I certainly don’t know much about blood typing, but I sure was hopeful that at least one of his five brothers would be a match. I do know that our God is a Way-maker, and that He can provide a match for our sweet Jedi. He will make a way where there seems to be no way. “See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” Isaiah 43:19
Many people have reached out asking how they could be tested. I have an answer for you now. The transplant coordinator said the best way is for you to go to bethematch.org and click on “join”. Under this page you will find a place to join online and request a free kit to be sent to you in the mail.
Thank you in advance for supporting Jedi in this way!
We are enjoying each day with our sweet guy and love seeing that he has more energy and less nausea. We pray that this continues and even improves in the next two weeks before his 2nd round of chemotherapy.
I will leave you with excerpts from a song that gives me a lot of encouragement:
You are
Way maker, miracle worker, promise keeper
Light in the darkness
My God, that is who You are
Even when I don't see it, You're working
Even when I don't feel it, You're working
You never stop working
Oh, His name is above depression
His name is above loneliness
Oh, His name is above disease
His name is above cancer
His name is above every other name
Yes it is
You are
Way maker, miracle worker, promise keeper
Light in the darkness
My God, that is who You are
That is who You are!
Journal entry by Dianna Schaller — 6 hours ago
When Jedi was heading into surgery and other procedures there came a point when we had to part ways. When we got to that point we would give him hugs and kisses and with as much gusto as we could muster we would say, “See you in a little bit!” Since he would soon be under anesthesia it really felt like a “little bit” to him.
Today we had to say that again except this time to Jedi’s oldest brother, Noah. He is off to boot camp for 10 weeks. I know once he gets there he will be super busy, so my hope is that it will seem like a “little bit” that we are apart. Please pray for him during his training.
Jedi has been doing well overall. He continues to go out for walks three times a day. Yesterday he even rode his bike for a bit! We continue to encourage lots of fluids, but that remains a struggle as he “feels full of liquids” as he puts it
Everyone who knows Jedi is very familiar with his love of guinea pigs. Noah had been searching for a piggie to get for Jedi before he left for boot camp. Two days ago we welcomed Mocha into our family. He is a timid, cute, multicolored American short-haired guinea pig. Jedi is so excited as you can see by his smile in the picture.
I received a call today from the bone marrow transplant coordinator in Madison. We have an appointment to meet with the team next week. She informed me that after reviewing the boys’ blood typing against Jedi’s the closest match was only 9/10. She said they need a perfect 10/10 match, so they will need to review Patrick’s and my blood typing to see how Jedi got his, and then she will go to the National bone marrow donor registry to pursue a match. I have to admit this was kind of a hard blow for me. I certainly don’t know much about blood typing, but I sure was hopeful that at least one of his five brothers would be a match. I do know that our God is a Way-maker, and that He can provide a match for our sweet Jedi. He will make a way where there seems to be no way. “See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” Isaiah 43:19
Many people have reached out asking how they could be tested. I have an answer for you now. The transplant coordinator said the best way is for you to go to bethematch.org and click on “join”. Under this page you will find a place to join online and request a free kit to be sent to you in the mail.
Thank you in advance for supporting Jedi in this way!
We are enjoying each day with our sweet guy and love seeing that he has more energy and less nausea. We pray that this continues and even improves in the next two weeks before his 2nd round of chemotherapy.
I will leave you with excerpts from a song that gives me a lot of encouragement:
You are
Way maker, miracle worker, promise keeper
Light in the darkness
My God, that is who You are
Even when I don't see it, You're working
Even when I don't feel it, You're working
You never stop working
Oh, His name is above depression
His name is above loneliness
Oh, His name is above disease
His name is above cancer
His name is above every other name
Yes it is
You are
Way maker, miracle worker, promise keeper
Light in the darkness
My God, that is who You are
That is who You are!
My thoughts and prayers go out to Jedi as I can truly relate. When I was in third grade I was diagnosed with leukemia and did not attend school from 3rd grade till 7th grade. I spent weeks and months in hospitals over that course of time with countless blood tests drawn and so many that both arms were black and blue as well sore and I couldn’t straighten them out. At that point they started finger pricks. I also had bone marrows done and I will never forget that not very pleasant and I had no I idea until the first one was done. By the grace of God my father and mother was introduced to a nutritionist. That doctor put me on a strict regimen of not sugars but organic vegetables and fruits and carrot juice. I would go through 100 pounds of carrots a week. I was limited to the types of meats I was permitted to eat and was to sit in the sunshine for so many minutes a day. The doctors scratched their heads as my skin color turned orange and i began improving. Through out those years I was either confined to our house or hospital and the way I got involved with shooting was started at this time. My grandfather of whom was on the army shooting team took me out 2-3 times a week shooting 22 and constantly challenged me. That is where my competitiveness developed and attraction to precision shooting. I am now in my late 40’s and live every day as it could be my last. If I desire to try something I go for it. Stay strong keep p options open and keep positive and stay steadfast in faith and hope. So with that said Our prayers go out to Jedi and all his family.
Stay strong Bud!!!
MGMIAM
Gold $$ Contributor
It’s time to ride!
Journal entry by Dianna Schaller — 8 hours ago
Today started out with a trip to the clinic for Jedi’s weekly line dressing change and blood work. His ANC level dropped a bit more as well as his Hgb and HCT. His electrolytes looked good. Overall this is not uncommon at this stage of chemotherapy. He’s been able to tolerate a little more activity this week like a short hike and playing whiffle ball with his brothers. He does get pretty tired after activity and needs to take a decent nap to recover. His nausea is really hit and miss as to timing of day but still pretty consistent every day. Sometimes a smell or even the thought of something will send him over the edge and make him vomit. Poor guy He’s able to stay hydrated and keep most of his food down, so it’s not a huge medical concern at this point.
Jedi’s doctor is looking into sending his cancer tissue to a special lab for genome profiling. With that information they may be able to find better treatment for his specific type of cancer. This testing is quite expensive and insurance does not always cover the expense. Please pray with us that this will be approved and we can get this extra testing done.
Patrick and I got our blood drawn today and it will be sent to a special lab along with Jedi’s blood for HLA typing. This will help the specialists at Madison figure out what would make up the best bone marrow donor for Jedi. We are hopeful that we will have answers from this testing when we go to Madison next Wednesday.
Isaiah and Grandpa Schaller have been busy working on the blue ATV for Jedi to ride around in our yard. Jedi is super excited about this project and wakes up every day asking what the plan for the ATV is that day. Today was a big day and our sweet little guy got to ride it! His smile was a mile wide as he drove slowly around our yard. There are so many things he either can’t do with his central line or doesn’t have the energy to do right now, so this was a huge win for him!
On the Noah front, we have not heard from him since he got on the bus ride to basic training. This is hard for us as we are a very communicative family. I searched the base he is at on Facebook and was able to find some soldier family groups to join. I have gotten a lot of good information from them and supposedly “no news is good news”. To add to the frustration the “usual” basic training routines are all mixed up because of the pandemic, so we have no idea when we will hear from Noah. Obviously this is yet another thing that weighs on my mind these days, and I frequently need to remind myself that God loves these boys and has them in the palm of His hand!
A fellow soldier mom posted these thoughts in our group tonight and I would like to share them with you:
Just because we have faith in God, it does not mean that we get to live on a perpetual high. The pressure of life will be felt, the tears will flow, and there will be temptation. Through every circumstance, God will be there, offering his grace, joy, and peace. If we live with God, he will lead us in a new direction and give us new power to face those circumstances that may be hard for us to live with. Like all of you, I have my struggles, but I know God is bigger than every one of them. There are times you may say, “I’m not strong enough for this,” well, the strength comes from the trust you put in God to work things out. The strength comes in the patience to wait on the Lord. Sometimes the strength comes from reaching out to someone and saying, “I need help.” God will give you everything you need if you trust him.
When my heart is overwhelmed: lead me to the rock that is higher than I. Psalm 61:2
Dear Heavenly Father,
Please give me the trust in you even when I feel I’m walking through a valley. Could you put me on high when I am feeling low? Please give me the strength to let go and know you have every situation covered. Lead me in the direction to find all you have in store for me. May your will be done in me, through me and around me.
In Jesus Name, Amen
Journal entry by Dianna Schaller — 8 hours ago
Today started out with a trip to the clinic for Jedi’s weekly line dressing change and blood work. His ANC level dropped a bit more as well as his Hgb and HCT. His electrolytes looked good. Overall this is not uncommon at this stage of chemotherapy. He’s been able to tolerate a little more activity this week like a short hike and playing whiffle ball with his brothers. He does get pretty tired after activity and needs to take a decent nap to recover. His nausea is really hit and miss as to timing of day but still pretty consistent every day. Sometimes a smell or even the thought of something will send him over the edge and make him vomit. Poor guy He’s able to stay hydrated and keep most of his food down, so it’s not a huge medical concern at this point.
Jedi’s doctor is looking into sending his cancer tissue to a special lab for genome profiling. With that information they may be able to find better treatment for his specific type of cancer. This testing is quite expensive and insurance does not always cover the expense. Please pray with us that this will be approved and we can get this extra testing done.
Patrick and I got our blood drawn today and it will be sent to a special lab along with Jedi’s blood for HLA typing. This will help the specialists at Madison figure out what would make up the best bone marrow donor for Jedi. We are hopeful that we will have answers from this testing when we go to Madison next Wednesday.
Isaiah and Grandpa Schaller have been busy working on the blue ATV for Jedi to ride around in our yard. Jedi is super excited about this project and wakes up every day asking what the plan for the ATV is that day. Today was a big day and our sweet little guy got to ride it! His smile was a mile wide as he drove slowly around our yard. There are so many things he either can’t do with his central line or doesn’t have the energy to do right now, so this was a huge win for him!
On the Noah front, we have not heard from him since he got on the bus ride to basic training. This is hard for us as we are a very communicative family. I searched the base he is at on Facebook and was able to find some soldier family groups to join. I have gotten a lot of good information from them and supposedly “no news is good news”. To add to the frustration the “usual” basic training routines are all mixed up because of the pandemic, so we have no idea when we will hear from Noah. Obviously this is yet another thing that weighs on my mind these days, and I frequently need to remind myself that God loves these boys and has them in the palm of His hand!
A fellow soldier mom posted these thoughts in our group tonight and I would like to share them with you:
Just because we have faith in God, it does not mean that we get to live on a perpetual high. The pressure of life will be felt, the tears will flow, and there will be temptation. Through every circumstance, God will be there, offering his grace, joy, and peace. If we live with God, he will lead us in a new direction and give us new power to face those circumstances that may be hard for us to live with. Like all of you, I have my struggles, but I know God is bigger than every one of them. There are times you may say, “I’m not strong enough for this,” well, the strength comes from the trust you put in God to work things out. The strength comes in the patience to wait on the Lord. Sometimes the strength comes from reaching out to someone and saying, “I need help.” God will give you everything you need if you trust him.
When my heart is overwhelmed: lead me to the rock that is higher than I. Psalm 61:2
Dear Heavenly Father,
Please give me the trust in you even when I feel I’m walking through a valley. Could you put me on high when I am feeling low? Please give me the strength to let go and know you have every situation covered. Lead me in the direction to find all you have in store for me. May your will be done in me, through me and around me.
In Jesus Name, Amen
After whiffle ball
Hearing the ATV running for the first time!
Telling his brother Noah to “Be Strong”!
This is one happy kid!
Thanks a bunch, Grandpa!
jonbearman
I live in new york state,how unfortunate !
May Our Lord give the Family Comfort and wisdom. May Our Lord help guide the Physicians to a cure for him. God Bless this Family with Love and Compassion.
Coyotefurharvester
Silver $$ Contributor
My neighbor girls(Jedi's age are making and sending a card) hope and prayers from 2 families.
MGMIAM
Gold $$ Contributor
To Madison we go
Journal entry by Dianna Schaller — 2 minutes ago
I got out for a walk by myself this morning, and as I was staring at the beautiful bluffs around me I started to think about how protective they are to this area. I said a prayer of thanksgiving for this beautiful protection and also for God’s protection on our trip today. Please join your prayers with mine as we travel today with Jedi to Madison. We are going to see the bone marrow transplant team there. We ask for physical protection and also protection for our hearts. I have no doubt we will get some information that will be tough to hear. The bone marrow transplant process is a tough one and from what I understand the providers want to prepare you for that. I will update more this evening after our appointment. Until then we ask for your prayers and thank you all so much for your partnership in Jedi’s journey! We love you all!
“But you, O Lord, are a shield about me, my glory, and the lifter of my head. I cried aloud to the Lord, and he answered me from his holy hill. Selah”
Psalm 3:3-4
Journal entry by Dianna Schaller — 2 minutes ago
I got out for a walk by myself this morning, and as I was staring at the beautiful bluffs around me I started to think about how protective they are to this area. I said a prayer of thanksgiving for this beautiful protection and also for God’s protection on our trip today. Please join your prayers with mine as we travel today with Jedi to Madison. We are going to see the bone marrow transplant team there. We ask for physical protection and also protection for our hearts. I have no doubt we will get some information that will be tough to hear. The bone marrow transplant process is a tough one and from what I understand the providers want to prepare you for that. I will update more this evening after our appointment. Until then we ask for your prayers and thank you all so much for your partnership in Jedi’s journey! We love you all!
“But you, O Lord, are a shield about me, my glory, and the lifter of my head. I cried aloud to the Lord, and he answered me from his holy hill. Selah”
Psalm 3:3-4
MGMIAM
Gold $$ Contributor
Plans, plans and more plans
Journal entry by Dianna Schaller — 7 hours ago
Since the beginning of this journey there have been lots of plans. Plans made by the doctors, made by the nurses, made by family/friends, and made by us. Plans sometimes worked out, and sometimes they needed to be adjusted. Today we saw the head pediatric bone marrow transplant doctor at the Madison children’s hospital, and heard her plan for Jedi’s treatment. We originally were told that none of the boys were a perfect match to be Jedi’s bone marrow donor. Today we found out that the type testing was done at a broad, low level and it had some inconsistencies that didn’t make sense, so that is why they wanted to test Patrick’s and my blood. The results are not back yet for those tests, so according to the doctor there is still a possibility that one of the boys could be a match. Praise the Lord for that possibility! With a sibling donor we learned the chances of short- and long-term complications are significantly lower than with a stranger match. The doctor said we should know by the end of this week or early next week. Please help us pray that one of the boys is a match for Jedi!
We also learned the specifics of what a bone marrow transplant entails. Some of that was hard to hear. The doctor said Jedi could be very sick during the in-patient part of the transplant while we wait for the new cells to take hold in the bone marrow. That is usually an expected part of the process, but definitely a hard one to get through. When he gets through that part, we will need to stay in Madison for quite some time as an outpatient for monitoring.
Before transplant can happen, we obviously need a donor, but we also need his cancer to be in remission. We start chemo again on Monday and then approximately three weeks after that Jedi will have another PET scan and bone marrow biopsy. We pray those tests will show he is in remission
Overall, the doctor was pleased with how well Jedi is doing. He still has the occasional nausea, but he gained a pound from last week. We praise the Lord for that! He’s still struggling to take his preventative medicine every day, (we’ve tried many different tricks of the trade ) but he is getting it down and even improving somewhat. This is a minor issue in the grand scheme of things, but nevertheless a daily challenge; sometimes with tears.
So, those are the “plans” made by us here on earth. We pray that those plans work out, certainly, but I also must share what the Lord keeps placing in front of my face. I mean, constantly, in devotions, messages from family and friends, posts from strangers, and even (seemingly) random things popping up on my phone...
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”Jeremiah 29:11
I really think He’s trying to drive home to me that His plans are greater than mine or the doctor’s, and that He is working those plans for our good!
Also, I would be remiss if I didn’t keep going...
“Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.”
Jeremiah 29:12-13
We will continue to call on Him for guidance and blessings on our journey. Thank you for everyone who has joined their prayers with ours. We are every so grateful for you! We have witnessed some great blessings these last few months, and we pray for eyes and hearts that continue to see and feel those blessings through the trials!
My prayer in song:
"Jesus Draw Me Ever Nearer"
Jesus draw me ever nearer
As I labour through the storm.
You have called me to this passage,
And I'll follow, though I'm worn.
May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart's testing,
With Your likeness let me wake.
Jesus guide me through the tempest;
Keep my spirit staid and sure.
When the midnight meets the morning,
Let me love You even more.
Let the treasures of the trial
Form within me as I go -
And at the end of this long passage,
Let me leave them at Your throne.
Journal entry by Dianna Schaller — 7 hours ago
Since the beginning of this journey there have been lots of plans. Plans made by the doctors, made by the nurses, made by family/friends, and made by us. Plans sometimes worked out, and sometimes they needed to be adjusted. Today we saw the head pediatric bone marrow transplant doctor at the Madison children’s hospital, and heard her plan for Jedi’s treatment. We originally were told that none of the boys were a perfect match to be Jedi’s bone marrow donor. Today we found out that the type testing was done at a broad, low level and it had some inconsistencies that didn’t make sense, so that is why they wanted to test Patrick’s and my blood. The results are not back yet for those tests, so according to the doctor there is still a possibility that one of the boys could be a match. Praise the Lord for that possibility! With a sibling donor we learned the chances of short- and long-term complications are significantly lower than with a stranger match. The doctor said we should know by the end of this week or early next week. Please help us pray that one of the boys is a match for Jedi!
We also learned the specifics of what a bone marrow transplant entails. Some of that was hard to hear. The doctor said Jedi could be very sick during the in-patient part of the transplant while we wait for the new cells to take hold in the bone marrow. That is usually an expected part of the process, but definitely a hard one to get through. When he gets through that part, we will need to stay in Madison for quite some time as an outpatient for monitoring.
Before transplant can happen, we obviously need a donor, but we also need his cancer to be in remission. We start chemo again on Monday and then approximately three weeks after that Jedi will have another PET scan and bone marrow biopsy. We pray those tests will show he is in remission
Overall, the doctor was pleased with how well Jedi is doing. He still has the occasional nausea, but he gained a pound from last week. We praise the Lord for that! He’s still struggling to take his preventative medicine every day, (we’ve tried many different tricks of the trade ) but he is getting it down and even improving somewhat. This is a minor issue in the grand scheme of things, but nevertheless a daily challenge; sometimes with tears.
So, those are the “plans” made by us here on earth. We pray that those plans work out, certainly, but I also must share what the Lord keeps placing in front of my face. I mean, constantly, in devotions, messages from family and friends, posts from strangers, and even (seemingly) random things popping up on my phone...
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”Jeremiah 29:11
I really think He’s trying to drive home to me that His plans are greater than mine or the doctor’s, and that He is working those plans for our good!
Also, I would be remiss if I didn’t keep going...
“Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.”
Jeremiah 29:12-13
We will continue to call on Him for guidance and blessings on our journey. Thank you for everyone who has joined their prayers with ours. We are every so grateful for you! We have witnessed some great blessings these last few months, and we pray for eyes and hearts that continue to see and feel those blessings through the trials!
My prayer in song:
"Jesus Draw Me Ever Nearer"
Jesus draw me ever nearer
As I labour through the storm.
You have called me to this passage,
And I'll follow, though I'm worn.
May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart's testing,
With Your likeness let me wake.
Jesus guide me through the tempest;
Keep my spirit staid and sure.
When the midnight meets the morning,
Let me love You even more.
Let the treasures of the trial
Form within me as I go -
And at the end of this long passage,
Let me leave them at Your throne.
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