Prayers for Nephew
- Thread starter MGMIAM
- Start date
MGMIAM
Gold $$ Contributor
Happy Thursday from our bubble in Madison Now that we have been here a few days we have started to get into somewhat of a routine. I say somewhat because each day presents its own challenges that can cause shifting in the schedule. Jedi has now had three days of two chemo medications. One is an injection and the other goes into his line. The first night after starting these medications Jedi spiked a fever of 102. Poor guy felt bad physically and then emotionally he had a bit of breakdown because he thought the fever was going to delay his transplant again. My heart broke for him as he once again thought there would be delays on his path to healing. I reassured him the best I could that his transplant would not be delayed because of this fever. Then the nurse explained to him that the medications can sometimes cause fever. That evening the doctor came to see him and also reassured him that a fever would not delay his transplant. They drew blood cultures as a precaution (which have not grown anything) and started him on antibiotics. Last night he had a low grade fever and tonight was the same thing. We have a suspicion that it is the injectable medication causing the fever because it has come at the same time every night. Today was the last dose of that one, so we’ll see if he still has fever tomorrow night. We are praying that is not the case. The doctors said if he had another fever he will likely be on antibiotics until after his transplant. I would rather he stay off of them as long as possible, so please help us pray his temperatures stay good. Today Jedi was started an anti-seizure medication to prevent seizures that can happen as a side effect of the new immunosuppressant medication he will start tomorrow. Please help us pray that his body responds well to that new medication with no negative side effects.
Jedi loves all the cards you have sent him through the uwhealth link. All the creativity in the cards has made him smile and gives him something more to chat with his nurses about. I’m sorry that I was unaware that you need to choose a hospital to send the card to. Jedi is at American Family Children’s Hospital (the link is in the last post if you still want to send a card)
The doctors also told us a bit more about the donor process. Through what I read and thought I was told, the donor would have to take medication that would cause the stem cells to go into the blood stream and then they would be harvested like a blood donation. Today the doctors told us that they usually use that process for adult transplants, but for kids they prefer the traditional donation process of collecting the actual marrow from the donor. This is a more in-depth procedure done with anesthesia and afterwards can be painful for the donor. Please help me pray for Jedi’s donor to stay healthy and for the procedure and recovery to go smoothly. We don’t know who this donor is, but we do know that he/she is giving a piece of him/her-self to help our sweet boy on his journey to complete healing. We are so very thankful for him/her and ask that God would allow him/her to feel our gratitude until the day we can express it ourselves.
We continue to have hope each day that God will provide what Jedi and what everyone involved in his care needs. God tells us “to take hold of the hope set before us [that we] may be greatly encouraged. We have this hope as an anchor for the soul, firm and secure.” Hebrews 6:18b-19a
Such a great comfort in these times
Thank you for continuing to support us on this journey! Love to you all!
Jedi loves all the cards you have sent him through the uwhealth link. All the creativity in the cards has made him smile and gives him something more to chat with his nurses about. I’m sorry that I was unaware that you need to choose a hospital to send the card to. Jedi is at American Family Children’s Hospital (the link is in the last post if you still want to send a card)
The doctors also told us a bit more about the donor process. Through what I read and thought I was told, the donor would have to take medication that would cause the stem cells to go into the blood stream and then they would be harvested like a blood donation. Today the doctors told us that they usually use that process for adult transplants, but for kids they prefer the traditional donation process of collecting the actual marrow from the donor. This is a more in-depth procedure done with anesthesia and afterwards can be painful for the donor. Please help me pray for Jedi’s donor to stay healthy and for the procedure and recovery to go smoothly. We don’t know who this donor is, but we do know that he/she is giving a piece of him/her-self to help our sweet boy on his journey to complete healing. We are so very thankful for him/her and ask that God would allow him/her to feel our gratitude until the day we can express it ourselves.
We continue to have hope each day that God will provide what Jedi and what everyone involved in his care needs. God tells us “to take hold of the hope set before us [that we] may be greatly encouraged. We have this hope as an anchor for the soul, firm and secure.” Hebrews 6:18b-19a
Such a great comfort in these times
Thank you for continuing to support us on this journey! Love to you all!
Bill Norris
Back in the Day
Faith will see Jedi the donor and the families thru whatever the journey presents. Prayers that all goes well in the coming days. Hang in there Jedi. U still got alot of living to do.
MGMIAM
Gold $$ Contributor
Good morning Jedi’s journey family! An update on Jedi physically:
Transplant day -3: He has been feeling good for the most part. He was able to get up and play some out in the hallway play area. He had a fun time bowling with the plastic ball and pins. We’re played ping pong. We turned on music, because were the only ones in the BMT hallway currently, and had a little dance party.
Jedi’s labs are stable with the exception of his hemoglobin, which took a dip. The doctors decided it was best to not get further behind, so he received a blood transfusion yesterday with no complications. Praise the Lord. Today is his last day of one chemo medicine, and then he has two more days of the other. He is really getting hit hard as the one he is still on is every 6 hours. Please continue to pray that his body is sustained through all this conditioning process.
An update on Jedi emotionally:
Jedi has a heart for people and we knew going into this that, even harder than the physical challenges, Jedi would struggle with being away from home; specifically his brothers and his kitty. Last night it kind of came to a head, and we had about an hour where he cried and said he just wanted to go home. Big tears and sobs as he worked through the pain of missing them. I cried right along with him, because sometimes it’s just best to sit with someone in their grief and give it space. Jedi’s smart enough to know that he can’t go home now, but his heart yearns for that safe, special place.
As I woke this morning I was reflecting on last night and went to God’s word for comfort. He gave me what I needed...He’s so good like that, isn’t He? My devotion continues to study Habakkuk (his name means to wrestle; and to embrace). Like us, he wrestled with questions and emotions, but then he embraced reality, and found his trust and hope in God. Even though Jedi wants to go home, we know he has to go through this in order to completely heal. We wrestle and we embrace. Even tho things will get worse before they get better “yet I will rejoice in the Lord, I will be joyful in God my Savior. The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights.” Habakkuk 3:18-19
So how did Jedi end the day? We prayed. He got in the shower, he turned on some music and started singing his favorite songs. He used his imagination and “baked” with water and wash clothes. He ended the day in smiles (thank you, Jesus).
Transplant day -3: He has been feeling good for the most part. He was able to get up and play some out in the hallway play area. He had a fun time bowling with the plastic ball and pins. We’re played ping pong. We turned on music, because were the only ones in the BMT hallway currently, and had a little dance party.
Jedi’s labs are stable with the exception of his hemoglobin, which took a dip. The doctors decided it was best to not get further behind, so he received a blood transfusion yesterday with no complications. Praise the Lord. Today is his last day of one chemo medicine, and then he has two more days of the other. He is really getting hit hard as the one he is still on is every 6 hours. Please continue to pray that his body is sustained through all this conditioning process.
An update on Jedi emotionally:
Jedi has a heart for people and we knew going into this that, even harder than the physical challenges, Jedi would struggle with being away from home; specifically his brothers and his kitty. Last night it kind of came to a head, and we had about an hour where he cried and said he just wanted to go home. Big tears and sobs as he worked through the pain of missing them. I cried right along with him, because sometimes it’s just best to sit with someone in their grief and give it space. Jedi’s smart enough to know that he can’t go home now, but his heart yearns for that safe, special place.
As I woke this morning I was reflecting on last night and went to God’s word for comfort. He gave me what I needed...He’s so good like that, isn’t He? My devotion continues to study Habakkuk (his name means to wrestle; and to embrace). Like us, he wrestled with questions and emotions, but then he embraced reality, and found his trust and hope in God. Even though Jedi wants to go home, we know he has to go through this in order to completely heal. We wrestle and we embrace. Even tho things will get worse before they get better “yet I will rejoice in the Lord, I will be joyful in God my Savior. The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights.” Habakkuk 3:18-19
So how did Jedi end the day? We prayed. He got in the shower, he turned on some music and started singing his favorite songs. He used his imagination and “baked” with water and wash clothes. He ended the day in smiles (thank you, Jesus).
MGMIAM
Gold $$ Contributor
https://www.uwhealth.org/onlineservices/greetingcards/#
option = American Family children's hospital
option = American Family children's hospital
MGMIAM
Gold $$ Contributor
It’s Here
Journal Entry by Patrick Schaller — 4 hours agoIt’s day 0. Transplant day!
This post will be what we pray today will be, anticlimactic. That is how the doctors have described it repeatedly. A big day but not a lot going on!
Still, we give thanks to the Lord for bringing us to this point. For providing the healing to Jedidiah’s body so that today could happen. For moving someone’s heart to be the bone marrow donor that will play such a vital role in our son’s life. For the doctors, nurses and all other providers that have cared for Jedi. For our family who has sacrificed so much to be there for us these last 7 months. For all of you reading these posts and sharing in our journey and lifting Jedi up in your prayers.
We give thanks for all of these things that the Lord has provided to bring us to today.
We know the transplant is supposed to start early and that Jedi will most likely start feeling pretty miserable by the weekend. Not because of the transplant but because of the effects of the preparation.
We don’t know what the future holds for Jedi but we know that he is a Blessed Child of God and that today is cause for celebration.
Thank you for celebrating with us!
“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. 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. I will be found by you,” declares the Lord, “and will bring you back from captivity. I will gather you from all the nations and places where I have banished you,” declares the Lord, “and will bring you back to the place from which I carried you into exile.””
Jeremiah 29:11-14 NIV
MGMIAM
Gold $$ Contributor
Good evening to Jedi‘s journey family! Yesterday was transplant day; otherwise known as day zero. We started the day out with devotion, prayers for a successful transplant and then had Jedi’s favorite ice cream (Chubby Hubby) for breakfast. Boy, did that put a smile in his face! We see a tradition in the making on his transplant birthday every year He had some pre-transplant medications and checked in with his teacher and classmates. He decided he wanted to have his transplant snuggled in the chair with me, and promptly fell asleep. That Benadryl usually gets him every time
The attending doctor had to personally verify the cells and then hand carry them into the room. They said Jedi’s donor was very generous. Jedi got almost 900 ml of cells through his line over about 6 hours. He was monitored very closely and the nurse didn’t leave the room for the first two hours. We are so thankful for their diligent care. Jedi tolerated the infusion with only a slight bit of itching. The doctors checked on him periodically throughout the day and were happy with the results. We are so grateful and kept thanking the Lord for His provision once again for our sweet boy!
Today Jedi woke up feeling good and with a lot of energy. This could be partly because his hemoglobin and hematocrit haven’t been this high since before he got sick in the spring! He ate super good today and even gained a bit of weight since yesterday. Today was the day he needed to get his nasogastric (NG) tube so it is in place if a time comes when he can not eat well normally. It was hard for him to accept getting a tube when he feels so good, but in true Jedi fashion he rose to the occasion and took the tube placement like a trooper. It took the nurses a few tries to get it in because Jedi has a deviated septum and they met some resistance during placement. A few hours later he is already getting used to it and has even eaten some food. He was concerned it might make him gag, but he’s doing his best to just ignore it
All his labs remain stable and his numbers are still declining like they expect. The doctors best prediction is that Jedi may start feeling worse this weekend (as the NP put it...the chemo shut down Jedi’s car factory. Eventually Jedi’s little cars (blood cells) will break down and the new workers (donor cells) have not gotten the factory up and running yet. Until they do he will be more prone to mucositis and infection) Patrick was talking with Jedi today and mentioned that throughout his journey the word “atypical” has been used a lot by the doctors. Usually the word was used in a negative fashion related to his illness. Well, we thought wouldn’t it be nice if Jedi was “atypical” in a good way through his transplant process and didn’t have all those negative side effects the doctors talk about? Let’s boldly pray for that!
We will continue to enjoy that Jedi feels good and take each day as it comes. There’s so much hope in knowing that God goes before us and is preparing the perfect way for Jedi to continue on this journey.
We would ask that you all continue to pray that Jedi’s body stays strong, that as his numbers continue to drop his negative side effects would be minimal, his body would stay free from infection, and those amazing donor cells start to set up shop nicely in Jedi’s body.
Our hearts are filled with thankfulness and they sing:
My heart is filled with thankfulness
To Him who walks beside;
Who floods my weaknesses with strength
And causes fears to fly;
Whose ev'ry promise is enough
For ev'ry step I take,
Sustaining me with arms of love
And crowning me with grace.
My heart is filled with thankfulness
To him who reigns above,
Whose wisdom is my perfect peace,
Whose ev'ry thought is love.
For ev'ry day I have on earth
Is given by the King;
So I will give my life, my all,
To love and follow him.
-Keith Getty/Stuart Townend
Thank you all again for joining our voices in prayer and praise to our gracious God. Thank you for sitting with us in our struggles and rejoicing in our victories! We thank God for you!
The attending doctor had to personally verify the cells and then hand carry them into the room. They said Jedi’s donor was very generous. Jedi got almost 900 ml of cells through his line over about 6 hours. He was monitored very closely and the nurse didn’t leave the room for the first two hours. We are so thankful for their diligent care. Jedi tolerated the infusion with only a slight bit of itching. The doctors checked on him periodically throughout the day and were happy with the results. We are so grateful and kept thanking the Lord for His provision once again for our sweet boy!
Today Jedi woke up feeling good and with a lot of energy. This could be partly because his hemoglobin and hematocrit haven’t been this high since before he got sick in the spring! He ate super good today and even gained a bit of weight since yesterday. Today was the day he needed to get his nasogastric (NG) tube so it is in place if a time comes when he can not eat well normally. It was hard for him to accept getting a tube when he feels so good, but in true Jedi fashion he rose to the occasion and took the tube placement like a trooper. It took the nurses a few tries to get it in because Jedi has a deviated septum and they met some resistance during placement. A few hours later he is already getting used to it and has even eaten some food. He was concerned it might make him gag, but he’s doing his best to just ignore it
All his labs remain stable and his numbers are still declining like they expect. The doctors best prediction is that Jedi may start feeling worse this weekend (as the NP put it...the chemo shut down Jedi’s car factory. Eventually Jedi’s little cars (blood cells) will break down and the new workers (donor cells) have not gotten the factory up and running yet. Until they do he will be more prone to mucositis and infection) Patrick was talking with Jedi today and mentioned that throughout his journey the word “atypical” has been used a lot by the doctors. Usually the word was used in a negative fashion related to his illness. Well, we thought wouldn’t it be nice if Jedi was “atypical” in a good way through his transplant process and didn’t have all those negative side effects the doctors talk about? Let’s boldly pray for that!
We will continue to enjoy that Jedi feels good and take each day as it comes. There’s so much hope in knowing that God goes before us and is preparing the perfect way for Jedi to continue on this journey.
We would ask that you all continue to pray that Jedi’s body stays strong, that as his numbers continue to drop his negative side effects would be minimal, his body would stay free from infection, and those amazing donor cells start to set up shop nicely in Jedi’s body.
Our hearts are filled with thankfulness and they sing:
My heart is filled with thankfulness
To Him who walks beside;
Who floods my weaknesses with strength
And causes fears to fly;
Whose ev'ry promise is enough
For ev'ry step I take,
Sustaining me with arms of love
And crowning me with grace.
My heart is filled with thankfulness
To him who reigns above,
Whose wisdom is my perfect peace,
Whose ev'ry thought is love.
For ev'ry day I have on earth
Is given by the King;
So I will give my life, my all,
To love and follow him.
-Keith Getty/Stuart Townend
Thank you all again for joining our voices in prayer and praise to our gracious God. Thank you for sitting with us in our struggles and rejoicing in our victories! We thank God for you!
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