Prayers for Nephew
- Thread starter MGMIAM
- Start date
MGMIAM
Gold $$ Contributor
To God be the Glory
Journal entry by Dianna Schaller — 8 hours ago
Jedi had his PET scan and bone marrow biopsy today. He says the worst part about the PET scan is that he has to be in a dark, quiet room all by himself for about 45 minutes This is not surprising as Jedi loves to socialize. That went well and right after he went upstairs to have his biopsy. It was so nice that they did it right in a procedure room in the clinic. The biopsy went really quickly, and the doctor came to talk to us about the results from the scan while Jedi was still waking up. She showed us his original PET scan from the beginning of June compared to the one from today. It was astonishing to see the difference. She said that everything had dramatically improved and only a few tiny spots of cancer remained. She was shocked and admitted that she had not expected these results. We told her that we prayed for such a dramatic response that it could only be explained by the hand of God. Well, we sure got that!
When Jedi woke up the nurse brought him into the room with us and the doctor told him the results. Jedi jumped up and said, “Yes! That is the best news!”
“Shout for joy to God, all the earth!” Psalms 66:1
This afternoon the doctor called to let us know she had spoken with the bone marrow transplant doctor from Madison. That doctor told her that the potential donor match is being evaluated this week. They will also meet this Wednesday as a group to discuss the next steps in Jedi’s treatment. There are a few more people who need to look at his scans and the bone marrow. Once that is all done and if they are in agreement we may be headed to Madison to begin the process for transplant. From what we are told, there has been a lot of debate surrounding how to proceed with Jedi’s conditioning treatment prior to the transplant. This is due to the fact that his condition is so rare and there are no standards for treatment. We have told the doctors that they have lots of prayers being said for their wisdom and guidance regarding Jedi’s treatment. Please help us continue to pray for these amazing doctors. We truly feel they are working so hard to provide the best care for our sweet Jedi!
One more thing...on the way home from the clinic Jedi and I started singing about how great and mighty our God is:
“My God is so great, so strong and so mighty, there's nothing my God cannot do.
My God is so great, so strong and so mighty, there's nothing my God cannot do.
The mountains are his, the rivers are his, the stars are His handiwork, too.
My God is so great, so strong and so mighty, there's nothing my God cannot do, for you!”
There truly is nothing our God cannot do! We are so thankful that He showed that power today with Jedi’s healing! “To our God and Father be glory for ever and ever. Amen.” Philippians 4:20
Journal entry by Dianna Schaller — 8 hours ago
Jedi had his PET scan and bone marrow biopsy today. He says the worst part about the PET scan is that he has to be in a dark, quiet room all by himself for about 45 minutes This is not surprising as Jedi loves to socialize. That went well and right after he went upstairs to have his biopsy. It was so nice that they did it right in a procedure room in the clinic. The biopsy went really quickly, and the doctor came to talk to us about the results from the scan while Jedi was still waking up. She showed us his original PET scan from the beginning of June compared to the one from today. It was astonishing to see the difference. She said that everything had dramatically improved and only a few tiny spots of cancer remained. She was shocked and admitted that she had not expected these results. We told her that we prayed for such a dramatic response that it could only be explained by the hand of God. Well, we sure got that!
When Jedi woke up the nurse brought him into the room with us and the doctor told him the results. Jedi jumped up and said, “Yes! That is the best news!”
“Shout for joy to God, all the earth!” Psalms 66:1
This afternoon the doctor called to let us know she had spoken with the bone marrow transplant doctor from Madison. That doctor told her that the potential donor match is being evaluated this week. They will also meet this Wednesday as a group to discuss the next steps in Jedi’s treatment. There are a few more people who need to look at his scans and the bone marrow. Once that is all done and if they are in agreement we may be headed to Madison to begin the process for transplant. From what we are told, there has been a lot of debate surrounding how to proceed with Jedi’s conditioning treatment prior to the transplant. This is due to the fact that his condition is so rare and there are no standards for treatment. We have told the doctors that they have lots of prayers being said for their wisdom and guidance regarding Jedi’s treatment. Please help us continue to pray for these amazing doctors. We truly feel they are working so hard to provide the best care for our sweet Jedi!
One more thing...on the way home from the clinic Jedi and I started singing about how great and mighty our God is:
“My God is so great, so strong and so mighty, there's nothing my God cannot do.
My God is so great, so strong and so mighty, there's nothing my God cannot do.
The mountains are his, the rivers are his, the stars are His handiwork, too.
My God is so great, so strong and so mighty, there's nothing my God cannot do, for you!”
There truly is nothing our God cannot do! We are so thankful that He showed that power today with Jedi’s healing! “To our God and Father be glory for ever and ever. Amen.” Philippians 4:20
Jedi’s favorite game to play with daddy at the clinic!
MGMIAM
Gold $$ Contributor
His fight song
Journal entry by Dianna Schaller — 14 hours ago
Hi, all! Just a quick update this afternoon from the tumor board who met today to discuss Jedi’s case. They recommended that Jedi have one more round of chemotherapy here in LaCrosse based on two factors:
1. PET scan showed that there were still a few areas where the cancer was active, so it would be beneficial to get them resolved prior to transplant.
2. Due to Covid, new standards have been put in place where the donor needs to be monitored for 14 days post donation. Jedi could not receive the stem cells until at least two weeks after they are harvested (this has not happened yet). They don’t want his cancer to flare back up like before, so best to keep the therapy going.
They also discussed more potential testing to see if his HLH has resolved. Those findings would have an impact on whether they would recommend the higher or lower intensity conditioning treatment prior to transplant. If his HLH is still active, and they use the higher intensity therapy, it could cause his body to react in a bad way. On the flip side, his cancer is very aggressive, and there may be a higher potential for relapse if the lower intensity conditioning therapy is used. As you can see, there is a great deal of debate surrounding Jedi’s treatment, therefore, a great deal of prayer work needs to be done on behalf of these doctors. Please help us by keeping them in your prayers as well!
Jedi has had a bit more nausea/vomiting this week, but overall his spirits are good! Tomorrow we have more labs and then start chemo round 3 on Monday. Please pray that his platelet count and his ANC level come up prior to that
On another note, Jedi’s sweet Aunt Maria has designed t-shirts to support him in this journey. I love that Jedi had a part in helping design them, too. The front of the shirt is super cool and relates to the story I tell in the next paragraph! If you are interested in checking them out here is the link:
(I will put a picture in this post)
Click on this link to order and for more info.
http://www.123formbuilder.com/form-5547778/form
One more thing... in the car today Jedi started singing, “Fight Song”. He has always been a motivated kid and a fighter, but this journey has really highlighted that side of him. He sung it with such gusto that I just smiled and cried while listening to him. Jedi knows ultimately that God is fighting this cancer. He knows that God is with him every step of this journey, and he reminds himself of that every time he recites his favorite bible verse, “Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9
He also knows that he has a family of believers who are fighting right along side him with their prayers!
I’ve said it before and I’ll say it again...we can learn a lot from these little ones God had blessed us with!
Journal entry by Dianna Schaller — 14 hours ago
Hi, all! Just a quick update this afternoon from the tumor board who met today to discuss Jedi’s case. They recommended that Jedi have one more round of chemotherapy here in LaCrosse based on two factors:
1. PET scan showed that there were still a few areas where the cancer was active, so it would be beneficial to get them resolved prior to transplant.
2. Due to Covid, new standards have been put in place where the donor needs to be monitored for 14 days post donation. Jedi could not receive the stem cells until at least two weeks after they are harvested (this has not happened yet). They don’t want his cancer to flare back up like before, so best to keep the therapy going.
They also discussed more potential testing to see if his HLH has resolved. Those findings would have an impact on whether they would recommend the higher or lower intensity conditioning treatment prior to transplant. If his HLH is still active, and they use the higher intensity therapy, it could cause his body to react in a bad way. On the flip side, his cancer is very aggressive, and there may be a higher potential for relapse if the lower intensity conditioning therapy is used. As you can see, there is a great deal of debate surrounding Jedi’s treatment, therefore, a great deal of prayer work needs to be done on behalf of these doctors. Please help us by keeping them in your prayers as well!
Jedi has had a bit more nausea/vomiting this week, but overall his spirits are good! Tomorrow we have more labs and then start chemo round 3 on Monday. Please pray that his platelet count and his ANC level come up prior to that
On another note, Jedi’s sweet Aunt Maria has designed t-shirts to support him in this journey. I love that Jedi had a part in helping design them, too. The front of the shirt is super cool and relates to the story I tell in the next paragraph! If you are interested in checking them out here is the link:
(I will put a picture in this post)
Click on this link to order and for more info.
http://www.123formbuilder.com/form-5547778/form
One more thing... in the car today Jedi started singing, “Fight Song”. He has always been a motivated kid and a fighter, but this journey has really highlighted that side of him. He sung it with such gusto that I just smiled and cried while listening to him. Jedi knows ultimately that God is fighting this cancer. He knows that God is with him every step of this journey, and he reminds himself of that every time he recites his favorite bible verse, “Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9
He also knows that he has a family of believers who are fighting right along side him with their prayers!
I’ve said it before and I’ll say it again...we can learn a lot from these little ones God had blessed us with!
Nobody fights alone! Kicking cancer’s butt together!
Brother time!
jackson1
Silver $$ Contributor
Dianna, Again thank you for sharing Jedi and your family's story, and allowing us to wish, hope, and most importantly pray for him and his family. Some day in heaven we can all get together and thank God for the outcome. When I visit this site Jedi's progress is the first thing I check.
MGMIAM
Gold $$ Contributor
Over life’s tempestuous sea
Journal entry by Dianna Schaller — 7 hours ago
These last few days have felt like we were in a tiny boat being tossed back and forth in the rough seas. I started to think something was going on with Jedi last Friday as he was sleeping more and just generally didn’t have as much energy. On Saturday late morning he wanted to take a nap, so I definitely knew something wasn’t right. Sure enough he spiked a fever Saturday night which landed us in the emergency room. They drew lab work and blood cultures which revealed decent numbers for him. He got a dose of antibiotics, some fluids and we were able to go home (thank the Lord!) Sunday his fever got up to 103, but since this is similar to what has happened with him previously we kept a close eye on him at home.
Round 3, day 1 of chemo was completed today. He did well overall, but day 1 is a long day arriving at the clinic at 8:30 am and not leaving until 4:30 pm. He slept quite a bit with fever in the morning, then daddy surprised him with an early afternoon visit! The amazing child life specialist (who just met Jedi last week and talked to him about how he likes escape rooms and puzzles) put together a puzzle type scavenger hunt that he rocked! He probably told me about 10 times how fun it was, and how much he loves doing scavenger hunts with clues. Needless to say this gal nailed it with Jedi
Near the end of the day I got a call from Madison children’s hospital telling me that more discussion has been had, and the decision has been made to recommend two more rounds of chemo for Jedi prior to transplant. I assume the two includes this round, but I have to get clarification from the doctor first. I know they are concerned about the HLH still being active, and it’s possible those tests won’t be finished until after the 4th round would start. We sure want them to have all the information they need in order to make the best decisions for his transplant treatment.
Through this journey, I have learned not to plan too concretely for the future, however, I do like to think ahead and plan a bit. With this new recommendation, the timeline would take us into September for transplant. This means Jedi will be home when the other boys would start school and when Noah gets home from basic training. This situation raises a whole new series of questions for our family.
Although we feel thrown back and forth with unexpected fevers, ER visits, and changes in treatment plans, we know God is there piloting us through. Just as a ship pilot is there to maneuver vessels through dangerous or congested waters, our Savior is doing the same for us every day! The following hymn has been a favorite of mine since I was little. I’ve sung it countless times throughout my life...lots of times with tears streaming down my face. I hope it gives you peace like it does for me Thank you for keeping Jedi and our family in your prayers!
Jesus, Saviour, pilot me
Over life's tempestuous sea;
Unknown waves before me roll,
Hiding rock and treach'rous shoal.
Chart and compass come from Thee.
Jesus, Saviour, pilot me.
As a mother stills her child,
Thou canst hush the ocean wild;
Boist'rous waves obey Thy will
When Thou sayest to them, "Be still!"
Wondrous Sovereign of the sea,
Jesus, Saviour, pilot me.
When at last I near the shore,
And the fearful breakers roar
'Twixt me and the peaceful rest,
Then, while leaning on Thy breast,
May I hear Thee say to me,
"Fear not, I will pilot thee."
Journal entry by Dianna Schaller — 7 hours ago
These last few days have felt like we were in a tiny boat being tossed back and forth in the rough seas. I started to think something was going on with Jedi last Friday as he was sleeping more and just generally didn’t have as much energy. On Saturday late morning he wanted to take a nap, so I definitely knew something wasn’t right. Sure enough he spiked a fever Saturday night which landed us in the emergency room. They drew lab work and blood cultures which revealed decent numbers for him. He got a dose of antibiotics, some fluids and we were able to go home (thank the Lord!) Sunday his fever got up to 103, but since this is similar to what has happened with him previously we kept a close eye on him at home.
Round 3, day 1 of chemo was completed today. He did well overall, but day 1 is a long day arriving at the clinic at 8:30 am and not leaving until 4:30 pm. He slept quite a bit with fever in the morning, then daddy surprised him with an early afternoon visit! The amazing child life specialist (who just met Jedi last week and talked to him about how he likes escape rooms and puzzles) put together a puzzle type scavenger hunt that he rocked! He probably told me about 10 times how fun it was, and how much he loves doing scavenger hunts with clues. Needless to say this gal nailed it with Jedi
Near the end of the day I got a call from Madison children’s hospital telling me that more discussion has been had, and the decision has been made to recommend two more rounds of chemo for Jedi prior to transplant. I assume the two includes this round, but I have to get clarification from the doctor first. I know they are concerned about the HLH still being active, and it’s possible those tests won’t be finished until after the 4th round would start. We sure want them to have all the information they need in order to make the best decisions for his transplant treatment.
Through this journey, I have learned not to plan too concretely for the future, however, I do like to think ahead and plan a bit. With this new recommendation, the timeline would take us into September for transplant. This means Jedi will be home when the other boys would start school and when Noah gets home from basic training. This situation raises a whole new series of questions for our family.
Although we feel thrown back and forth with unexpected fevers, ER visits, and changes in treatment plans, we know God is there piloting us through. Just as a ship pilot is there to maneuver vessels through dangerous or congested waters, our Savior is doing the same for us every day! The following hymn has been a favorite of mine since I was little. I’ve sung it countless times throughout my life...lots of times with tears streaming down my face. I hope it gives you peace like it does for me Thank you for keeping Jedi and our family in your prayers!
Jesus, Saviour, pilot me
Over life's tempestuous sea;
Unknown waves before me roll,
Hiding rock and treach'rous shoal.
Chart and compass come from Thee.
Jesus, Saviour, pilot me.
As a mother stills her child,
Thou canst hush the ocean wild;
Boist'rous waves obey Thy will
When Thou sayest to them, "Be still!"
Wondrous Sovereign of the sea,
Jesus, Saviour, pilot me.
When at last I near the shore,
And the fearful breakers roar
'Twixt me and the peaceful rest,
Then, while leaning on Thy breast,
May I hear Thee say to me,
"Fear not, I will pilot thee."
Always winking at me!
Fever frog from Granny (he sings “You Give Me Fever” and ...
Driving big brother to check the trail cameras
Scavenger hunt
Paint to reveal one of the clues!
I have to apologize for not keeping up to date ,the subject upsets me too much. With all my heart I wish you guys the best !
jackson1
Silver $$ Contributor
Dianna, Jedi is blessed to have a mother and family like you. Myself and family pray daily for Jedi and hope for his full recovery. Your story deeply touches me. Cannot begin to understand God's will in this, but believe something beautiful will result from this. Again thank you for allowing us a small part in your story.
MGMIAM
Gold $$ Contributor
Defeat any obstacle
Journal entry by Dianna Schaller — 2 hours ago
Whew! We just finished up round 3 of chemotherapy infusions yesterday. We logged nearly full time job hours between clinic visits, chemo infusions and travel time. I’m so thankful to have this time to be with Jedi and care for him as he receives treatment.
Over the weekend he had a pretty big issue with bone/joint pain. We remember this happening during his last round, but it wasn’t quite as severe. Jedi was in tears Saturday night as he struggled with pain in his knees and shins. We worked through the various comfort measures for pain and settled on heat to the area. He got a couple of doses of Tylenol and was able to sleep fitfully through the night. Thank the Lord this started to resolve Sunday morning and he got some relief. The doctor says this can happen as a side effect when you stop high dose steroids so suddenly. This is a risk vs benefit thing since tapering off the steroids could cause the lymphoma to develop resistance. For the next round we will be my aware of this and use preventative measures to hopefully reduce his overall discomfort.
The transplant doctor from Madison called us last week and spent a good deal of time explaining her rationale for the treatment plan they decided on. Patrick and I were both so thankful for her thoroughness in both research and explanation. She explained that the decision for more rounds of chemo is to get Jedi into a “deep remission”, which will increase his overall chances for complete cure. She also explained the HLH factor and how it played into her decision to use the less intensive conditioning treatment prior to transplant. Whether one has a familial tendency (less likely for Jedi) or a secondary HLH (more likely for Jedi; secondary to lymphoma) the use of a more intensive conditioning treatment could cause some of his organs to shut down. Obviously, this risk is greater than the potential for relapse so that is why we are going with the less intensive option. We are extremely thankful to her and all the doctors who have put in multiple hours of research to determine the best course of treatment for our sweet Jedi. I shared with her that many of Jedi’s prayer warriors are praying for her, and she said she can always use more “wisdom from above” Thank you all for continuing to pray for Jedi’s providers.
Our prayer as we go through these next few weeks is that Jedi’s side effects from the chemo are less intense than they were prior, specifically his nausea/vomiting. Also that his body continues to heal; eradicating the cancer cells and resolving the HLH.
As I shared a while ago, Jedi and Noah are both working hard to “kick butt” at cancer and basic training. They have been encouraging each other mostly through letters. I wanted to share something that Jedi drew for Noah recently that we all could be reminded of (I will put the picture in this post):
“A man who is true and believes in God can defeat any obstacle.” -By Jedi
Journal entry by Dianna Schaller — 2 hours ago
Whew! We just finished up round 3 of chemotherapy infusions yesterday. We logged nearly full time job hours between clinic visits, chemo infusions and travel time. I’m so thankful to have this time to be with Jedi and care for him as he receives treatment.
Over the weekend he had a pretty big issue with bone/joint pain. We remember this happening during his last round, but it wasn’t quite as severe. Jedi was in tears Saturday night as he struggled with pain in his knees and shins. We worked through the various comfort measures for pain and settled on heat to the area. He got a couple of doses of Tylenol and was able to sleep fitfully through the night. Thank the Lord this started to resolve Sunday morning and he got some relief. The doctor says this can happen as a side effect when you stop high dose steroids so suddenly. This is a risk vs benefit thing since tapering off the steroids could cause the lymphoma to develop resistance. For the next round we will be my aware of this and use preventative measures to hopefully reduce his overall discomfort.
The transplant doctor from Madison called us last week and spent a good deal of time explaining her rationale for the treatment plan they decided on. Patrick and I were both so thankful for her thoroughness in both research and explanation. She explained that the decision for more rounds of chemo is to get Jedi into a “deep remission”, which will increase his overall chances for complete cure. She also explained the HLH factor and how it played into her decision to use the less intensive conditioning treatment prior to transplant. Whether one has a familial tendency (less likely for Jedi) or a secondary HLH (more likely for Jedi; secondary to lymphoma) the use of a more intensive conditioning treatment could cause some of his organs to shut down. Obviously, this risk is greater than the potential for relapse so that is why we are going with the less intensive option. We are extremely thankful to her and all the doctors who have put in multiple hours of research to determine the best course of treatment for our sweet Jedi. I shared with her that many of Jedi’s prayer warriors are praying for her, and she said she can always use more “wisdom from above” Thank you all for continuing to pray for Jedi’s providers.
Our prayer as we go through these next few weeks is that Jedi’s side effects from the chemo are less intense than they were prior, specifically his nausea/vomiting. Also that his body continues to heal; eradicating the cancer cells and resolving the HLH.
As I shared a while ago, Jedi and Noah are both working hard to “kick butt” at cancer and basic training. They have been encouraging each other mostly through letters. I wanted to share something that Jedi drew for Noah recently that we all could be reminded of (I will put the picture in this post):
“A man who is true and believes in God can defeat any obstacle.” -By Jedi
Encouraging his big brother
Digital photo frame gift for Madison. You can send pictures to ...
Getting the high score on Ms. PAC-man
Mini golfing with family
Jedi’s request to mini golf with the whole family
MGMIAM
Gold $$ Contributor
Fear is a liar
Journal entry by Dianna Schaller — 2 hours ago
I woke up suddenly at 0430 today, breathing hard and looking around to see where Jedi was. He was sleeping somewhat fitfully in his bed right next to me. I felt him and he was quite warm again, so my heart just sank. Fear of what these fevers might mean for Jedi’s future started to overwhelm my thoughts. I prayed for peace for my heart and mind, so I could get back to sleep (adequate sleep is hard to come by these days)
We have been dealing with low-grade fevers since Friday night developing into high fevers on Saturday and into today. We were a bit thrown off by this because Jedi is not due for chemo for another week. This is the earliest his fevers have returned prior to chemo. With each additional round of chemo we hope for no more fevers, but understand it may happen. We headed into the emergency last night for an evaluation. They drew blood cultures, labs and did a chest X-ray, urine culture and a COViD test. They also gave him IV fluids and antibiotics. We (and the doctors) were surprised to see that his ANC was 1.9, so we were able to go home and follow up with the doctor via telephone today.
Jedi’s temperatures have continued to spike today, soI called the doctor to see what her plan is. We talked for a good length of time about what could be going on and a potential plan of care going forward. For starters we are back in the emergency room to get more cultures, labs and antibiotics. Although we are not convinced he has an infection, we do need to rule that out first and cover him with antibiotics in the meantime. We discussed the possibility that the cause of his fevers may be the lymphoma or HLH. Tomorrow morning we have an appointment in the clinic and Jedi will likely have a CT scan to see if his lymphoma is acting up. If that’s not the case then it could likely be the HLH. Jedi’s oncology doctor has a plan to confer with his BMT doctor to see about changing to a chemo regimen that will target the HLH while also keeping the lymphoma at bay. As I’ve said before Jedi’s journey is very rare and complicated, so please keep these specific doctors in your prayers the next couple of days as they debate the best treatment for our sweet sunshine boy. Even with all the fevers and feeling cruddy he still smiles at the providers and thanks then for taking care of him. This makes me smile and often brings tears to my eyes...he’s just so precious! Currently he is watching funny cat videos on YouTube with his daddy and giggling. When the Tylenol kicks in his temperature goes down and he chats with us, laughs and eats a little bit. This is all reassuring. We will continue to do this until tomorrow morning when we go to the clinic.
About that fear that was keeping me awake this morning. There is a song that I’ve sung for years with the boys in the car. The tune and the lyrics have stuck with me. Fear is indeed a liar and will take us to places that are not good. As a dear, sweet friend reminded me this morning...I need to pray for my faith to be bigger than my fear. I’m working on this every day with the help of the Spirit.
Thank you all so much for your encouragement and your prayers. We treasure them all. I’ll update with more info in the days to come!
Fear is a Liar
When he told you you're not good enough
When he told you you're not right
When he told you you're not strong enough
To put up a good fight
When he told you you're not worthy
When he told you you're not loved
When he told you you're not beautiful
That you'll never be enough
Fear, he is a liar
He will take your breath
Stop you in your steps
Fear he is a liar
He will rob your rest
Steal your happiness
Cast your fear in the fire
'Cause fear he is a liar
Journal entry by Dianna Schaller — 2 hours ago
I woke up suddenly at 0430 today, breathing hard and looking around to see where Jedi was. He was sleeping somewhat fitfully in his bed right next to me. I felt him and he was quite warm again, so my heart just sank. Fear of what these fevers might mean for Jedi’s future started to overwhelm my thoughts. I prayed for peace for my heart and mind, so I could get back to sleep (adequate sleep is hard to come by these days)
We have been dealing with low-grade fevers since Friday night developing into high fevers on Saturday and into today. We were a bit thrown off by this because Jedi is not due for chemo for another week. This is the earliest his fevers have returned prior to chemo. With each additional round of chemo we hope for no more fevers, but understand it may happen. We headed into the emergency last night for an evaluation. They drew blood cultures, labs and did a chest X-ray, urine culture and a COViD test. They also gave him IV fluids and antibiotics. We (and the doctors) were surprised to see that his ANC was 1.9, so we were able to go home and follow up with the doctor via telephone today.
Jedi’s temperatures have continued to spike today, soI called the doctor to see what her plan is. We talked for a good length of time about what could be going on and a potential plan of care going forward. For starters we are back in the emergency room to get more cultures, labs and antibiotics. Although we are not convinced he has an infection, we do need to rule that out first and cover him with antibiotics in the meantime. We discussed the possibility that the cause of his fevers may be the lymphoma or HLH. Tomorrow morning we have an appointment in the clinic and Jedi will likely have a CT scan to see if his lymphoma is acting up. If that’s not the case then it could likely be the HLH. Jedi’s oncology doctor has a plan to confer with his BMT doctor to see about changing to a chemo regimen that will target the HLH while also keeping the lymphoma at bay. As I’ve said before Jedi’s journey is very rare and complicated, so please keep these specific doctors in your prayers the next couple of days as they debate the best treatment for our sweet sunshine boy. Even with all the fevers and feeling cruddy he still smiles at the providers and thanks then for taking care of him. This makes me smile and often brings tears to my eyes...he’s just so precious! Currently he is watching funny cat videos on YouTube with his daddy and giggling. When the Tylenol kicks in his temperature goes down and he chats with us, laughs and eats a little bit. This is all reassuring. We will continue to do this until tomorrow morning when we go to the clinic.
About that fear that was keeping me awake this morning. There is a song that I’ve sung for years with the boys in the car. The tune and the lyrics have stuck with me. Fear is indeed a liar and will take us to places that are not good. As a dear, sweet friend reminded me this morning...I need to pray for my faith to be bigger than my fear. I’m working on this every day with the help of the Spirit.
Thank you all so much for your encouragement and your prayers. We treasure them all. I’ll update with more info in the days to come!
Fear is a Liar
When he told you you're not good enough
When he told you you're not right
When he told you you're not strong enough
To put up a good fight
When he told you you're not worthy
When he told you you're not loved
When he told you you're not beautiful
That you'll never be enough
Fear, he is a liar
He will take your breath
Stop you in your steps
Fear he is a liar
He will rob your rest
Steal your happiness
Cast your fear in the fire
'Cause fear he is a liar
We celebrated Noah’s birthday with his itty bitty We’ll ...
Beautiful backdrop on our bike ride
Granny and the kids bought ice cream cones from the Schwanns ...
Jedi’s awesome granny rented this bike, so Jedi could rest ...
Fever of 102 and still smiling!
jackson1
Silver $$ Contributor
Still praying multiple times a day for Jedi, his family, and the doctors. I don't understand God's plan in all of this. As a grandpa, I feel your concerns and want the best for Jedi. Wish I had the answer, but all I have is faith. Praying and hoping for the day Jedi is well.
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