Prayers for Nephew
- Thread starter MGMIAM
- Start date
MGMIAM
Gold $$ Contributor
KEEP BELIEVING
Hello Jedi family! Jedi has had a busy week. He has had more energy and has decided he wanted to do a lot of stuff outside with the nicer weather. So proud of his attitude and motivation to increase his endurance and muscle mass. We were blessed with the opportunity to go snow tubing at Whitetail Ridge Ski Area at a non-public time. We all had a great time! We took the boys disc golfing on the weekend and it is quickly becoming a favorite family outdoor activity. Lots of walking and fresh air for us all! Jedi has also been riding his big brother’s atv all around our yard. Last night he played pretty hard in his Aunt and Uncle’s new indoor gym. He’s pretty good at not overdoing it, but that’s a lot of activity for him, so today he’s feeling a bit run down...resting and snuggling it is!
Yesterday was a quick visit to the LaCrosse Heme/Onc clinic for a blood draw. Dr. Hofmann only wanted a CBC to follow Jedi’s trend. His awesome nurse, Angie, drew his blood and it went great! Jedi also got to work with his amazing child life specialist, Cheri, to get his journey beads up to date and to do some “shopping” with his hard earned tokens. I wish you could have seen his smile as he walked out with two bags of loot. After school he quickly posted himself at the table for a few hours of Lego creation assembly!
We received his results and they were good and less good. His platelets increased the most; by 20k. His neutrophils, hemoglobin, hematocrit all stayed stable or increased a touch. Unfortunately, his white count took a dip; particularly his lymphocytes. This was quite disappointing to see since he has been doing so well, and I thought for sure that count would have increased. Jedi could see the disappointment on my face and so sweetly took my hand and said, “Mom, it’s going to be okay!” Oh, this boy, as much as he has been through is still thinking of and encouraging others!
I haven’t heard from Dr. Hofmann this week, so I assume we are just going to wait to see what next week shows. I did remember her voice in my head telling me that the lymphocyte counts, in particular, can jump around. I was blessed with the encouragement that God promises He is still working this all out for good...my job is to just believe. Jesus tells me, “Did I not tell you that if you believe, you will see the glory of God?””
(John 11:40). Yes! We have seen His glory time and time again throughout Jedi’s journey!
My sweet sister also reminded me that “these are just earthly numbers!” Another amazing sister in Christ reminded me to “hang in there with the ups and downs...we know Who’s holding the line and keeping Jedi’s journey mapped out!”
Boy, am I thankful for all of you who continue to encourage us with your words and your prayers!
Blessings on the rest of your week!
Sending love,
Dianna
“being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.” Philippians 1:6
Hello Jedi family! Jedi has had a busy week. He has had more energy and has decided he wanted to do a lot of stuff outside with the nicer weather. So proud of his attitude and motivation to increase his endurance and muscle mass. We were blessed with the opportunity to go snow tubing at Whitetail Ridge Ski Area at a non-public time. We all had a great time! We took the boys disc golfing on the weekend and it is quickly becoming a favorite family outdoor activity. Lots of walking and fresh air for us all! Jedi has also been riding his big brother’s atv all around our yard. Last night he played pretty hard in his Aunt and Uncle’s new indoor gym. He’s pretty good at not overdoing it, but that’s a lot of activity for him, so today he’s feeling a bit run down...resting and snuggling it is!
Yesterday was a quick visit to the LaCrosse Heme/Onc clinic for a blood draw. Dr. Hofmann only wanted a CBC to follow Jedi’s trend. His awesome nurse, Angie, drew his blood and it went great! Jedi also got to work with his amazing child life specialist, Cheri, to get his journey beads up to date and to do some “shopping” with his hard earned tokens. I wish you could have seen his smile as he walked out with two bags of loot. After school he quickly posted himself at the table for a few hours of Lego creation assembly!
We received his results and they were good and less good. His platelets increased the most; by 20k. His neutrophils, hemoglobin, hematocrit all stayed stable or increased a touch. Unfortunately, his white count took a dip; particularly his lymphocytes. This was quite disappointing to see since he has been doing so well, and I thought for sure that count would have increased. Jedi could see the disappointment on my face and so sweetly took my hand and said, “Mom, it’s going to be okay!” Oh, this boy, as much as he has been through is still thinking of and encouraging others!
I haven’t heard from Dr. Hofmann this week, so I assume we are just going to wait to see what next week shows. I did remember her voice in my head telling me that the lymphocyte counts, in particular, can jump around. I was blessed with the encouragement that God promises He is still working this all out for good...my job is to just believe. Jesus tells me, “Did I not tell you that if you believe, you will see the glory of God?””
(John 11:40). Yes! We have seen His glory time and time again throughout Jedi’s journey!
My sweet sister also reminded me that “these are just earthly numbers!” Another amazing sister in Christ reminded me to “hang in there with the ups and downs...we know Who’s holding the line and keeping Jedi’s journey mapped out!”
Boy, am I thankful for all of you who continue to encourage us with your words and your prayers!
Blessings on the rest of your week!
Sending love,
Dianna
“being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.” Philippians 1:6
Prayers. Keep the faith.
What js2013 said. We continue to send up prayers for Jedi, and am glad things are progressing. And we love the pictures with him and the cat.... 
Pets can be a great comfort in times like these.
Pets can be a great comfort in times like these.
MGMIAM
Gold $$ Contributor
Thank you for loving us
Hello, Jedi family! Boy, the time sure gets away from me these days, but good things are happening! On the medical side of things Jedi’s counts are what the doctor calls “stable”. They haven’t really moved that much in about three weeks, and we are told this is okay. Jedi’s doctor is thankful that they are not trending downwards As with other BMT cases they can give us estimates of the “magic” six month mark where most kids have had their counts recover. Jedi, however, has had a few set backs with an unusual conditioning regimen attacking the t-cells in particular and also his issues with CMV and the accompanying treatment. We continue to pray for recovery of his counts and improvement in his health multiple times each day. Then we focus on how good he looks, how his activity is improving with each passing week, and all the other blessings that go along with Jedi’s amazing personalityJedi had a follow up set of pulmonary function tests and the results from those were normal! Praise the Lord for protecting his lungs through all the treatment! Next week we will return to Madison for a follow up echocardiogram to check his heart function and that clot. We will also see Dr. Hofmann and get labs drawn.
So what has Jedi been up to? Well, he’s been busy with school where we think his focus is getting better. He still struggles a bit with “spacing out” as he calls it, but it’s getting better each week. He is doing a science project on viscosity and it is fun to hear him explain it so well and in such detail! He’s been getting outside and playing more both with his brothers and also “with his imagination” (as he likes to say) His brothers got the razor out at grandma and grandpa’s house and he took that for a spin. So many smiles! Also, he got on a single bike for the first time since last year. It was so good to see him powering through riding it (he was quite sore the day after).
As we come closer to the year mark since Jedi first got sick we’ve talking a lot about the blessings and the struggles of this journey. As I’m sure you can imagine there are many in both categories. One thing we keep coming back to (and I’m thankful we do) is the love that has been shown to us extending from close family all the way to strangers who have now become family in our hearts
We will never be able to truly express the gratitude we feel in words or posts, so I’ll just leave you with God’s word.
“Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. Whoever does not love does not know God, because God is love. This is how God showed his love among us: He sent his one and only Son into the world that we might live through him. This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins. Dear friends, since God so loved us, we also ought to love one another. No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us.”
1 John 4:7-12
Blessings from the Schallers
butchlambert
Site $$ Sponsor
A wonderful young man and family!
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