There is no body in the world can carry Jedi's spirit !!!
Prayers for Nephew
- Thread starter MGMIAM
- Start date
butchlambert
Site $$ Sponsor
I don't check in often, but he is in our prayers daily.
MGMIAM
Gold $$ Contributor
MAKING A FEW CHANGES
Good morning to all our faithful prayer warriors! Throughout the week I think about you, our faith family, quite often. I would love to update you all every day on Jedi’s progress, but as you can imagine life with six boys and a kitty can be busy at times In addition, lab results come in sporadically and then we wait for the doctor to call to explain her plan. This week we didn’t get the full plan until yesterday evening.
Jedi’s appointment to Madison last Wednesday went well. Noah got up early and drove us there safely (I’m so thankful for this because Jedi needs his IV meds changed out during the trip). They drew Jedi’s labs, administered Cytogam, and changed his line dressing. Everything went well and we even got in a game of Sorry with the child life specialist! The new fire and ice version can be challenging and a bit frustrating if you’ve never played it before
Jedi’s nurse practitioner, Kari, came to see us and discuss his labs and plan for the week. His counts are still quite low and they attribute that still to the antiviral medicine he is on to combat the CMV. His electrolyte levels looked good. His kidney function level has been slowly creeping up over the last few weeks, so we decided that a fluid bolus or two this week might be in order. His cyclosporine level was right where they wanted it and his CMV pcr was down to 257! Amazing; thank you, Lord! We pray it continues to go down to undetectable. Then we can lower his dose of the antiviral and eventually switch to pills. We also got the results from his engraftment studies. The myeloid cells are still at 98% donor cells which is amazing. They tell us that is likely as high as it will go. Unfortunately the fighter cells (like t-cells) dropped to half the percentage of what they were a month ago. Based on data from past studies there are situations where the level of t-cells jump around, so we need to look at the overall trend. We will draw those tests again tomorrow since it takes nearly two weeks to get the results. In addition, we are going to taper his immunosuppressants earlier than 120 days in hopes that the t-cells will wake up. Please help us pray for those donor cells in Jedi’s body. Also help us pray to accept God’s timing in this and not get so focused on our worldly timeline.
Overall, Jedi looks good. He is doing better in school and is able to focus more. He got out to play in the snow a few times this week, he walked up and down our stairs inside for exercise and also got outside for a few walks. He’s having trouble falling asleep at night so we are working on possible solutions to help his body calm down in the evening.
Tomorrow we head to Madison again for all the lab tests, to see the doctor and also to get an echo and ekg. It’s been a bit since he had his heart checked out, and he was having a few pains in his chest a week ago, so we decided it was time for follow up. We are praying for good heart function and a smaller clot!
Thank you all for checking in with us and I’ll update you again when we have the results from tomorrow’s visit. Blessings on your week!
“Find rest, O my soul, in God alone; my hope comes from Him. He alone is my rock and my salvation; He is my fortress, I will not be shaken.” ~Psalm 62:5-6
Good morning to all our faithful prayer warriors! Throughout the week I think about you, our faith family, quite often. I would love to update you all every day on Jedi’s progress, but as you can imagine life with six boys and a kitty can be busy at times In addition, lab results come in sporadically and then we wait for the doctor to call to explain her plan. This week we didn’t get the full plan until yesterday evening.
Jedi’s appointment to Madison last Wednesday went well. Noah got up early and drove us there safely (I’m so thankful for this because Jedi needs his IV meds changed out during the trip). They drew Jedi’s labs, administered Cytogam, and changed his line dressing. Everything went well and we even got in a game of Sorry with the child life specialist! The new fire and ice version can be challenging and a bit frustrating if you’ve never played it before
Jedi’s nurse practitioner, Kari, came to see us and discuss his labs and plan for the week. His counts are still quite low and they attribute that still to the antiviral medicine he is on to combat the CMV. His electrolyte levels looked good. His kidney function level has been slowly creeping up over the last few weeks, so we decided that a fluid bolus or two this week might be in order. His cyclosporine level was right where they wanted it and his CMV pcr was down to 257! Amazing; thank you, Lord! We pray it continues to go down to undetectable. Then we can lower his dose of the antiviral and eventually switch to pills. We also got the results from his engraftment studies. The myeloid cells are still at 98% donor cells which is amazing. They tell us that is likely as high as it will go. Unfortunately the fighter cells (like t-cells) dropped to half the percentage of what they were a month ago. Based on data from past studies there are situations where the level of t-cells jump around, so we need to look at the overall trend. We will draw those tests again tomorrow since it takes nearly two weeks to get the results. In addition, we are going to taper his immunosuppressants earlier than 120 days in hopes that the t-cells will wake up. Please help us pray for those donor cells in Jedi’s body. Also help us pray to accept God’s timing in this and not get so focused on our worldly timeline.
Overall, Jedi looks good. He is doing better in school and is able to focus more. He got out to play in the snow a few times this week, he walked up and down our stairs inside for exercise and also got outside for a few walks. He’s having trouble falling asleep at night so we are working on possible solutions to help his body calm down in the evening.
Tomorrow we head to Madison again for all the lab tests, to see the doctor and also to get an echo and ekg. It’s been a bit since he had his heart checked out, and he was having a few pains in his chest a week ago, so we decided it was time for follow up. We are praying for good heart function and a smaller clot!
Thank you all for checking in with us and I’ll update you again when we have the results from tomorrow’s visit. Blessings on your week!
“Find rest, O my soul, in God alone; my hope comes from Him. He alone is my rock and my salvation; He is my fortress, I will not be shaken.” ~Psalm 62:5-6
Bill Norris
Back in the Day
Continue to rock on Jedi. Hopefully, soon u will be well and back to normal. Prayers.
gambleone
Silver $$ Contributor
Praying for Jedi. My nephew was 6 when he developed acute lymphoblastic leukemia. I was there with his mom when he had his bone marrow test. He went through it all including chemo and in the end he went in remission and now cancer free for over 12 years. It's a hard journey but with the lords help, he will beat this and get on with his life. Good that his pediatric oncologist consulted other institutions and then developed a plan of care. Stay strong Jedi.
MGMIAM
Gold $$ Contributor
Christmas in February...yes, please!
This week we were finally able to celebrate our Schaller family Christmas at Granny and Grandpa’s house. We usually celebrate this the weekend after Christmas Day, but since we were in Madison at that time we decided to delay it. The smiles and giggles were plentiful all weekend. It was a mixed bag of emotions for me to be celebrating this tradition with Jedi again. I will admit there were times during last year that I wondered if it was in God’s plan for Jedi to spend another Christmas with our family here on Earth. I cried tears of joy and thanked God over and over for His continued healing of our sweet boy.This last week showed Jedi’s counts to be low, but stable. His CMV level was down to <250, so we reduced his antiviral infusion to once daily. His cyclosporine level was still elevated, so we reduced that dose as well (this is the immunosuppressant to prevent graft vs. host). We are going to continue to taper this in hopes that his counts will go up. I am hopeful that with the reduction of the antiviral medicines Jedi’s counts will go up as well.
Jedi also had an echocardiogram last Wednesday in Madison. It showed that the clot in his heart is still there and may be slightly larger. They explained to me that every time Jedi’s heart beats the line flicks against his heart wall and is causing irritation and also possibly causing the clot to be mobile. It’s hard for them to tell from the echo exactly what’s going on, but the consensus is the line needs to go. Through it all Jedi’s heart function has remained normal and we praise God for this! The plan is to remove his central line in two weeks, but he also will have scans requiring IV access, so we are trying to work out exactly when to remove the line. We are praying so hard that Jedi will be at a point where he won’t need daily IV medicine so we don’t need to place another line. Please join us in praying for all these things as well!
Jedi has been continuing to feel well and eat fairly decent. We have really been working on getting his fluids goal met every day...some days are harder than others. He’s been a champ and doesn’t usually complain. Most days he just plainly states, “I’m doing my best!” Oh, sweet boy, that’s all we can ask
To wrap up I’ll share a story from this week. Sometimes Jedi catches me off guard with his introspection and he did that again this week. He looked at me one evening while I was flushing his line and said, “Mom, I think I know why I’m doing so good after having cancer. My faith has helped me to get through some of the really bad times. I know some people don’t have faith in God, so they don’t have that to lean on. I also know that my support system is another reason I’m doing so good. I mean, my support system goes further than I could ever imagine!” Boy, there were tears (from me, of course) and then huge hugs as I thanked my sweet boy for sharing his heart with me. Jedi knows you’re all out there praying for him and encouraging him. He may not know you all by name, but he knows that God knows who you are and he thanks God for each of you. He feels the love of God through his support system that “goes further than (he) could ever imagine!” Thank you, thank you, thank you for being that support for Jedi and our family!
“And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.”
Ephesians 3:17-19
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