Prayers for Nephew
- Thread starter MGMIAM
- Start date
butchlambert
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I don't have the words, but we have been praying for you since this thread started.
MGMIAM
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He establishes our steps
Journal Entry by Dianna Schaller — 1 hour agoMaking treats with granny while dad is the IV pole
Playing with his cars while he waits for his blood draw
Helping put together a riding toy for the clinic
Testing out the new riding toy
Playing air soccer
Hi all! I went to type in “good morning” and realized it is already after noon Wow, I just realized I have lots to update you all on.
Last Friday we got the IV medicine all straightened out with home care (with the help of an amazing social worker), so we were able to get the teaching, the medicine and supplies and then head home! Jedi was feeling well, so he made treats with his granny for his hospital staff that evening. On Saturday we had to return for a blood draw to check his kidney function. Praise the Lord that number was coming down! Unfortunately, his CMV level was still up, so we continue on the IV medicine twice daily and need to add the CMV specific IVIG. Plans for chemo were set for Monday as it had been three weeks since his last round.
We had a great weekend with our isolation family. We got lots of baby snuggles. Jedi got to ride his ATV and even play spike ball.
Today we arrived to the clinic with the plan to get chemo, head home and return tomorrow and Wednesday in clinic. I knew something was going on when the doctor didn’t come in right away. Sure enough the IV medicines he is on can cause neutropenia and his ANC is 0.5; too low to give chemo. Jedi’s doctor spent a great deal of time on the phone to determine and then coordinate our next steps. Today Jedi is receiving the IVIG, and we are praying so hard that he does not have the negative side effects he did last time. In addition, the doctors collectively decided that a switch of IV medicine (that doesn’t cause bone marrow suppression) was in order. The new medicine can be very hard on the kidneys so we will likely need to give IV fluids prior to each dose (every 12 hours). Also, the medicine needs to be ordered and won’t be here until tomorrow, so we get to go home tonight. Tomorrow afternoon we will be admitted to the hospital to start the new medication and we are praying his ANC goes up so we can start chemo on Wednesday. There is a possibility of home infusion with this new medication, but it will again take time to coordinate. We will likely be in the hospital until Friday.
Jedi is in good spirits. He is really embracing the “go with the flow” attitude today, so I am extremely grateful for that!
This weekend I was reflecting on what round number of chemo we were supposed to start today. I realized it was #8! It’s crazy to think that we started out this journey planning, hoping and praying for three rounds of chemo, remission and then bone marrow transplant. We have gone through a lot of ups and downs, twists and turns since then. All of this change is a good reminder that “In their hearts humans plan their course, but the Lord establishes their steps.”
Proverbs 16:9.
As we once again navigate a change in treatment (and staying back in the hospital) we rest in the fact that the Lord promises His plans for us are good! “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.”
Jeremiah 29:11
Thank you all for praying for Jedi and our family. We wouldn’t want to take this journey without you...thanks to the Lord for bringing (and keeping) you into our lives!
MGMIAM
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Attachments
MGMIAM
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God will help
Journal Entry by Dianna Schaller — 3 hours agoJedi’s new Optimus Prime helmet hat He’s so excited to wear it!
Prime side
Granny got to visit and help with the new break out box
Jedi’s kitty loves to play. Isaiah is playing with him here
Today we are boldly praying that it is “go home” day! So far things are looking that way. Jedi tolerated the new medicine for his CMV and his 8th round of chemo! The love and provision from our Father has really been apparent in this hospitalization.
The doctor just left, so my mind is reeling with all that needs to be done for Jedi at home (yes, there is now more). I wanted to update you all, but please bear with me as I may jump around a bit
The new medicine Jedi is on for the CMV is indeed causing a lot of electrolyte imbalances. He has had to start taking more pills and these upset his tummy. Also some of the medication needs to be spaced out now so they don’t interact. We are really trying to find the balance in all this and it is hard! We are thankful that his levels have not dropped too much and that we can still go home. Please pray that he can keep the medicine down and, in turn, his levels up! As far as the CMV goes his most recent test was negative, so we praise the Lord for that!
On the IV side of things, he will now need a pump to infuse fluids before each dose of medicine. I am going for teaching today prior to discharge. I am told the process will take about 3 hours from start to finish and he will need it twice a day.
I’m feeling a but overwhelmed, but I know that God has got this and He’s got me. After all His word says, “God is within her, she will not fall; God will help her at break of day.” Psalms 46:5
The plan is to return for labs on Sunday and if okay to return to clinic on Monday for labs and IVIG.
I’m going to end on an amazing note! We got a call from Madison yesterday and were told that a CMV positive donor was found and has agreed to donate mid November. Jedi will be admitted to the children’s hospital on November 9th with a transplant date of November 18. Thank you, Lord, for answering our prayers in this area!
Much to do before we leave here, so I’ll close for now, but please know we are thankful for each and every one of you joining us in prayer and encouragement!
Your cat likes bags while mine likes boxes
jackson1
Silver $$ Contributor
Still praying For Jedi, the family, and the doctors and nurses. Thank you for your great reports regarding Jedi. I only wish I had some words of wisdom to help you out. There are a number of us praying and hoping that every thing works out. Being a grand father, I can only imagine the toll on the grand parents and will pray for them also. Tell Jedi there are a number of us caring and praying for him.
MGMIAM
Gold $$ Contributor
God is wonderful - A message from Jedi
Journal Entry by Dianna Schaller — 2 hours agoHi my name is Jedi, but you probably already know that. I just wanted to say thank you all for praying for me so much, you do not even know how much it means to me when you pray.
“Have I not commanded you? 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.
So go out today knowing God is with you and shine your light!
hpshooter
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MGMIAM
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A Big Day
Journal Entry by Patrick Schaller — 7 hours ago
I asked Jedi what u should post tonight on Caring Bridge and he said, “That I’m Awesome!”
So there you go... that’s the post!
I love that as we enter his 8th month of being sick that he still has such a sense of humor and positive vibe. No wonder Jesus calls out the Faith of little ones, he’s a testament and inspiration to at least one Papa.
Tomorrow is a big day. The final checks before we can go to Madison on the 9th. He’ll get a PET scan to ensure that the cancer is still in remission as well as some other baseline tests. We would ask for prayers concerning the PET scan specifically. Even though the doctor just expects it to confirm what’s seems obvious it’s those situations that are sometimes the hardest tests of our Faith. Those instances where you feel like you’ve been burned before. The good news is that God answers prayers in 3 ways:
- Yes (Psalm 17:13-15)
- Not Yet (Job 15:1-18,21)
- I have something better planned(Mathew 20:20-34)
Which means that so often we are really praying for ourselves and our acceptance of God’s answer.
However, we also know that God wants us to pray boldly:
“This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us—whatever we ask—we know that we have what we asked of him.”
1 John 5:14-15
So, with that in mind I ask everyone to pray boldly with us on Monday that Jedi’s tests all come back “positive”, that the Holy Spirit continues to sustain Jedi’s body and, this is the primary, that his cancer is gone!
Lord put us on the path to recovery!
Thank you everyone who contributes to be on this journey with us and support us in so many ways. I doubt I will ever truly be able to thank everyone in the way you deserve but know that we cherish all of you who continue to pray with, and for, us.
Have a Blessed night!
“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.”
John 14:27
MGMIAM
Gold $$ Contributor
A quick update...
Journal Entry by Patrick Schaller — 6 hours ago
Our family has been doing an excellent devotional lately and a specific part in today’s stood out.
The Apostle Paul put it like this, “we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us” (Romans 5:3-5 NIV).
I found great comfort in these verses, especially in light of today’s news that Jedi’s PET scan was not “clean”. Specifically his spleen was showing some activity.
What this, potentially, means is that his cancer his back and his BMT would be delayed again. Possibly more ramifications as well, to be honest my ears go a little numb everyone I hear news like that about one of my boys.
However, it could also be a by product from one of his medications and so he will have another PET scan on Friday. If, no when, it shows improvement we will be back on track. Otherwise we might be looking at a biopsy of his spleen to confirm.
We don’t want that...
Having said that; I’ll ask you all to pray with my family, all week, that Jedi’s body continues to heal and that his PET scan shows improvement so we can move on to BMT and Jedi being healed of this disease. Also pray for Dianna and I as the ups and downs take an emotional toll and we could both use a boost from the Holy Spirit.
I thank you, again, for your willingness to be here reading this and for your willingness to join us in prayer. It just can’t be overstated how grateful we are. It has been amazing to witness God’s love in action in our life throughout this trial.
“I believe in Christianity as I believe that the Sun has risen, not only because I see it but because by it, I see everything else.” - C.S. Lewis
In this way we “see” all of you.
Have a Blessed night!
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