Bill Norris
Back in the Day
Keep the faith Jedi and family. Prayers.
Prayers for Nephew
- Thread starter MGMIAM
- Start date
jackson1
Silver $$ Contributor
Dianna, thankyou for the report. Jedi is an inspiration to me. I pray many times a day for my grand daughters and my family, Jedi is and your family is also included. Having had a blood clot myself, that concerns me and will remember that in my prayers. Thank you Dianna for your fine reports through out this stressful time. Great pictures, enjoy seeing you all having a wonderful Christmas.
MGMIAM
Gold $$ Contributor
Hello Jedi family! I’ll share the great news right off the bat. We have been waiting months to see those two words: “not detected”. We were so thankful to get the news that he finally cleared the CMV and are now working to wean down his antiviral medicine. His counts are still quite low which we are attributing to the suppression caused by the antiviral. We will check another CMV level this week and if it is still not detected the plan is to transition Jedi to oral preventative antiviral medicines. Please help us pray for this.
Jedi’s transplant doctor, Dr. Hofmann, also called with the results from the engraftment studies. Unfortunately the percentage of donor lymphocyte cells decreased again. Dr. Hofmann said that this can happen especially with the type of pre-transplant conditioning treatment Jedi received. They chose the treatment based on Jedi’s HLH status and his type of cancer. The plan is to quickly wean him off of his immunosuppressants and pray that the donor lymphocytes will then “wake up”. Based on past cases this could take months to happen. No matter what the limited literature shows, though, we know that God is in control of Jedi’s path, and that He will work it all out for good. We just need to “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.” Psalms 46:10.
We pray for this stillness as we look towards Jedi’s CT and PET scans on Thursday. These are routine scans performed around 100 days post transplant to evaluate for disease. We ask for your prayers both for good results from the scans and for peace in the coming days “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7
Before I sign off I’d like to share something that happened to me last week in Madison:
“After Jedi’s doctor visit today in Madison we stopped at Trader Joe’s to pick up some groceries. As the cashier was scanning my items we started to talk about my day and I mentioned Jedi’s appt. We began to talk about his journey and how the Lord has brought him through stage 4 cancer and a subsequent bone marrow transplant. A man then came over to bag my groceries and the cashier told him about Jedi. I explained what a light Jedi has been to so many through his health struggles. When my groceries were all packed up the gentleman asked if he could pay for my groceries. Then he brought me two dozen roses. I just lost it and started to cry right there in the check out lane (so did the cashier, bless her heart) I told him how grateful I was and that it was amazing people like him who God keeps putting in our lives to show His goodness! The best part...Jedi has another prayer warrior“
“I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord.” Psalms 27:13-14
Blessings on your week!
Jedi’s transplant doctor, Dr. Hofmann, also called with the results from the engraftment studies. Unfortunately the percentage of donor lymphocyte cells decreased again. Dr. Hofmann said that this can happen especially with the type of pre-transplant conditioning treatment Jedi received. They chose the treatment based on Jedi’s HLH status and his type of cancer. The plan is to quickly wean him off of his immunosuppressants and pray that the donor lymphocytes will then “wake up”. Based on past cases this could take months to happen. No matter what the limited literature shows, though, we know that God is in control of Jedi’s path, and that He will work it all out for good. We just need to “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.” Psalms 46:10.
We pray for this stillness as we look towards Jedi’s CT and PET scans on Thursday. These are routine scans performed around 100 days post transplant to evaluate for disease. We ask for your prayers both for good results from the scans and for peace in the coming days “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7
Before I sign off I’d like to share something that happened to me last week in Madison:
“After Jedi’s doctor visit today in Madison we stopped at Trader Joe’s to pick up some groceries. As the cashier was scanning my items we started to talk about my day and I mentioned Jedi’s appt. We began to talk about his journey and how the Lord has brought him through stage 4 cancer and a subsequent bone marrow transplant. A man then came over to bag my groceries and the cashier told him about Jedi. I explained what a light Jedi has been to so many through his health struggles. When my groceries were all packed up the gentleman asked if he could pay for my groceries. Then he brought me two dozen roses. I just lost it and started to cry right there in the check out lane (so did the cashier, bless her heart) I told him how grateful I was and that it was amazing people like him who God keeps putting in our lives to show His goodness! The best part...Jedi has another prayer warrior“
“I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord.” Psalms 27:13-14
Blessings on your week!
Bill Norris
Back in the Day
God is good all the time. Amen.
MGMIAM
Gold $$ Contributor
Good morning Jedi’s journey family! As you know Jedi had his planned disease evaluation PET/CT scans this week. He did such a great job and made more friends with the staff in the imaging center. We know how mature and compliant Jedi is, but it surprises people when they meet him for the first time. It always brings a smile to my face when I see how he interacts with new people with such kindness and ease. We are so happy and relieved to tell you that there was no evidence of active lymphoma! All praise to God who has cleared Jedi’s body of cancer. We are so incredibly thankful!
We also got word that his CMV pcr was not detected again! All glory to God for clearing this from Jedi’s body as well. We are so thankful to be able to stop the antiviral medicine
On a not so great note, Jedi’s counts actually decreased this week. With cutting the antiviral medicines in half we were hoping that his counts would recover somewhat, but that was not the case. Dr. Hofmann again called us with an extensive discussion. Since his counts really took a hit when we started the ganciclovir we are hopeful that stopping it completely now will give Jedi’s bone marrow a chance to recover and raise those blood counts. With the dropping counts Dr. Hofmann is also a bit concerned that Jedi’s graft may be failing. This was a hard thing to hear. Jedi’s has been through so much and to tell him that broke our hearts. We continue to pray with hope that this of not true and that his body will recover on its own. Basically his doctor told us we just need to wait and see what his body does. We are clinging to “We wait in hope for the Lord; he is our help and our shield.” Psalms 33:20. If it is in His plan for Jedi’s counts to recover on their own, then they will. We are praying fervently for this! As I woke this morning the phrase “I surrender all!” kept going through my mind. And after that it was “I need thee every hour!” I’m so thankful for the Spirit placing these reminders on my heart. As a mother, I feel I need to do so many things to help Jedi get better and if he’s not then somehow I’m failing. It’s a struggle for sure, and that’s why I’m so grateful for the reminders that God fights for us. There is nothing I can “do” to make Jedi’s counts come up except to snuggle him, tell him I love him and point him to Jesus... and that’s enough
So the physical plan is to have Jedi’s counts rechecked here in LaCrosse on Tuesday. If they have gone up even a little bit then we will just continue to monitor them. If they do not go up or if they continue to trend down then he will have to have a bone marrow sample taken on Wednesday to evaluate whether or not his marrow is making cells. Of course we are praying that Jedi does not need to have this procedure, and we humbly ask that you would all join us in this prayer.
The plan is to have his line removed on Wednesday to give his heart a break from its presence. We can get access another way if needed, but again we pray that this is not needed
Jedi is his usual self just taking it all in stride and trying to focus on the positives. Yesterday, however, he was able to play online a bit with his friends and that brought up a lot of emotions. He is such a people person and he misses going to school and interacting with his friends. It’s just not the same seeing them on a computer screen. We keep praying that he improves physically so he can see some more people in person again. We are incredibly thankful for his Aunt Maria and Uncle Phil isolating so they could spend time with us this last week! It was so nice to snuggle our nephews/cousins and play with them in person!
Thank you all for joining us in these prayers. We love our community and thank God for you every day!
All to Jesus I surrender
All to Him I freely give
I will ever love and trust Him
In His presence daily live
All to Jesus I surrender
Humbly at His feet I bow
Worldly pleasures all forsaken
Take me, Jesus, take me now
All to Jesus I surrender
Make me Savior wholly thine
May Thy Holy Spirit fill me
May I know Thy power divine
I surrender all
I surrender all
All to Thee my blessed Savior
I surrender all
We also got word that his CMV pcr was not detected again! All glory to God for clearing this from Jedi’s body as well. We are so thankful to be able to stop the antiviral medicine
On a not so great note, Jedi’s counts actually decreased this week. With cutting the antiviral medicines in half we were hoping that his counts would recover somewhat, but that was not the case. Dr. Hofmann again called us with an extensive discussion. Since his counts really took a hit when we started the ganciclovir we are hopeful that stopping it completely now will give Jedi’s bone marrow a chance to recover and raise those blood counts. With the dropping counts Dr. Hofmann is also a bit concerned that Jedi’s graft may be failing. This was a hard thing to hear. Jedi’s has been through so much and to tell him that broke our hearts. We continue to pray with hope that this of not true and that his body will recover on its own. Basically his doctor told us we just need to wait and see what his body does. We are clinging to “We wait in hope for the Lord; he is our help and our shield.” Psalms 33:20. If it is in His plan for Jedi’s counts to recover on their own, then they will. We are praying fervently for this! As I woke this morning the phrase “I surrender all!” kept going through my mind. And after that it was “I need thee every hour!” I’m so thankful for the Spirit placing these reminders on my heart. As a mother, I feel I need to do so many things to help Jedi get better and if he’s not then somehow I’m failing. It’s a struggle for sure, and that’s why I’m so grateful for the reminders that God fights for us. There is nothing I can “do” to make Jedi’s counts come up except to snuggle him, tell him I love him and point him to Jesus... and that’s enough
So the physical plan is to have Jedi’s counts rechecked here in LaCrosse on Tuesday. If they have gone up even a little bit then we will just continue to monitor them. If they do not go up or if they continue to trend down then he will have to have a bone marrow sample taken on Wednesday to evaluate whether or not his marrow is making cells. Of course we are praying that Jedi does not need to have this procedure, and we humbly ask that you would all join us in this prayer.
The plan is to have his line removed on Wednesday to give his heart a break from its presence. We can get access another way if needed, but again we pray that this is not needed
Jedi is his usual self just taking it all in stride and trying to focus on the positives. Yesterday, however, he was able to play online a bit with his friends and that brought up a lot of emotions. He is such a people person and he misses going to school and interacting with his friends. It’s just not the same seeing them on a computer screen. We keep praying that he improves physically so he can see some more people in person again. We are incredibly thankful for his Aunt Maria and Uncle Phil isolating so they could spend time with us this last week! It was so nice to snuggle our nephews/cousins and play with them in person!
Thank you all for joining us in these prayers. We love our community and thank God for you every day!
All to Jesus I surrender
All to Him I freely give
I will ever love and trust Him
In His presence daily live
All to Jesus I surrender
Humbly at His feet I bow
Worldly pleasures all forsaken
Take me, Jesus, take me now
All to Jesus I surrender
Make me Savior wholly thine
May Thy Holy Spirit fill me
May I know Thy power divine
I surrender all
I surrender all
All to Thee my blessed Savior
I surrender all
MGMIAM
Gold $$ Contributor
BIG DAY TOMORROW
Good evening to all! Jedi had his blood work completed this morning and his counts rose very slightly. We are thankful and encouraged by these results! I spoke with Dr. Hofmann this afternoon and, although she was happy to hear that his counts increased, they did not increase enough for her to recommend forgoing the bone marrow biopsy tomorrow. She said if his numbers don’t trend more upward in the next few weeks they would want to check his bone marrow anyways. Since he will already be under anesthesia to have his line removed tomorrow it makes the most sense to do the biopsy then, too.
When I told Jedi about everything that was going to happen tomorrow he said, “So I’ll have a bandage here (pointing to his chest), and here (pointing to his arm where his IV will be) and here (pointing to his back)?” Yep. “They might as well wrap me up like a mummy!” Then we both laughed.
We have been told it is common to have mixed feelings about the line removal, because it’s the one physical thing that has been with us from the beginning. That made me feel a little better because, even though I knew getting his line out was a good thing, inside I felt conflicted. Jedi’s a bit anxious about no longer having quick access for blood draws. We told him this was totally understandable and that we would work through each time as it comes. He is really looking forward to not having a “wax” every time he needs a shower (all the extra hair growth from the cyclosporine has proved to be super painful with post shower adhesive removal).
We are praying that the line removal goes smoothly tomorrow and that his biopsy is uncomplicated and shows good results
We wish you all a peaceful night and thank you for praying for our sweet Jedi!
“If you say, “The Lord is my refuge,” and you make the Most High your dwelling, no harm will overtake you, no disaster will come near your tent. For he will command his angels concerning you to guard you in all your ways;”
Psalms 91:9-11
Good evening to all! Jedi had his blood work completed this morning and his counts rose very slightly. We are thankful and encouraged by these results! I spoke with Dr. Hofmann this afternoon and, although she was happy to hear that his counts increased, they did not increase enough for her to recommend forgoing the bone marrow biopsy tomorrow. She said if his numbers don’t trend more upward in the next few weeks they would want to check his bone marrow anyways. Since he will already be under anesthesia to have his line removed tomorrow it makes the most sense to do the biopsy then, too.
When I told Jedi about everything that was going to happen tomorrow he said, “So I’ll have a bandage here (pointing to his chest), and here (pointing to his arm where his IV will be) and here (pointing to his back)?” Yep. “They might as well wrap me up like a mummy!” Then we both laughed.
We have been told it is common to have mixed feelings about the line removal, because it’s the one physical thing that has been with us from the beginning. That made me feel a little better because, even though I knew getting his line out was a good thing, inside I felt conflicted. Jedi’s a bit anxious about no longer having quick access for blood draws. We told him this was totally understandable and that we would work through each time as it comes. He is really looking forward to not having a “wax” every time he needs a shower (all the extra hair growth from the cyclosporine has proved to be super painful with post shower adhesive removal).
We are praying that the line removal goes smoothly tomorrow and that his biopsy is uncomplicated and shows good results
We wish you all a peaceful night and thank you for praying for our sweet Jedi!
“If you say, “The Lord is my refuge,” and you make the Most High your dwelling, no harm will overtake you, no disaster will come near your tent. For he will command his angels concerning you to guard you in all your ways;”
Psalms 91:9-11
MGMIAM
Gold $$ Contributor
All things are possible with God
Good evening! A quick update before we head to Madison tomorrow. A few of the results have come back from Jedi’s bone marrow biopsy and basically they showed he has a low cell count. Dr. Hofmann said she was not surprised by this finding, and she wanted to wait for the actual cell count numbers to see what they showed. We will discuss this in detail tomorrow at his appt.Dr. Hofmann did say that she needs to see a decent recovery in Jedi’s counts tomorrow and if not we we need to start the process of activating the donor again. She would like to see his platelets at or near normal range, his hemoglobin up closer to 10 and his white count near double what it was last week. When I first heard this I thought it was a tall order, but then I reminded myself Who is in control and what He said, “With man this is impossible, but not with God; all things are possible with God.” Mark 10:27
Physically Jedi has been doing really good. He seems to have more energy and even started jogging up and down the driveway a few times this week. He is such a motivated kid and he really does want to get better!
With his line out now he has asked me a couple of times if he is going to get poked for his labs. I think these questions were more rhetorical since he knows there is no other way to get his blood Then he followed that question up with, “didn’t the doctor say that my appointments would extend out to once a month?” Are you getting the sense that this kid does not want to get poked tomorrow? He sure could use your prayers for his blood draw as he hasn’t been poked since the start of his BMT process a few months ago.
Thank you all for your prayers for Jedi’s counts to be really good tomorrow and for peace and minimal discomfort with his blood draw. We are so thankful for you! I’ll be back later this week with an update. Blessings to you all
Upgrades & Donations
This Forum's expenses are primarily paid by member contributions. You can upgrade your Forum membership in seconds. Gold and Silver members get unlimited FREE classifieds for one year. Gold members can upload custom avatars.
Click Upgrade Membership Button ABOVE to get Gold or Silver Status.
You can also donate any amount, large or small, with the button below. Include your Forum Name in the PayPal Notes field.
To DONATE by CHECK, or make a recurring donation, CLICK HERE to learn how.
Click Upgrade Membership Button ABOVE to get Gold or Silver Status.
You can also donate any amount, large or small, with the button below. Include your Forum Name in the PayPal Notes field.
To DONATE by CHECK, or make a recurring donation, CLICK HERE to learn how.