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Prayers for Nephew

God’s holding our hand
Journal Entry by Dianna Schaller — 6 hours ago
The last couple of days have been tough. Yesterday we went in for a clinic appointment and then Jedi was admitted to the hospital. We decided he was getting behind on his fluids due to the fevers and increased vomiting, so he would be best cared for in the hospital while they figure out how to control the fevers. Jedi had a CT scan yesterday to check for infection and the status of his lymph nodes. That scan showed enlarged lymph nodes in various places in his abdomen and chest. The radiology read it as progression of his lymphoma, so the discussion began regarding an alternative chemotherapy regimen along with steroids to control the HLH to be started today. This was a shock to us as well as the doctor. She said it was strange that the lymphoma showed so much sensitivity to his chemo regimen only to progress that far in a few weeks. Last night was hard and there were tears (mostly me) and lots of prayers for our sweet boy. God was holding our hands as we worked through what the new findings would mean for Jedi’s future.
When we spoke to Jedi’s oncologist this morning she told us she had been reviewing the scan, radiology in Madison reviewed Jedi’s scan, and she was in contact with numerous doctors at Madison. They collectively decided the best course of action was to do a needle biopsy of a small lymph node in his groin that showed growth. If it shows lymphoma cells, it is likely the cancer is progressing. If it shows inflamed tissue then it is likely the HLH causing the inflammation. Jedi had the biopsy this morning, and we are hoping for results tomorrow. Please help us pray that his cancer is not progressing!
Jedi also had an echocardiogram today to check his heart function. After that he slept a lot and finally got some energy this evening to go for a walk and play cribbage with us. As we were playing one of the other oncology doctors found us and told us that his echo showed normal heart function, but unfortunately it also revealed a decent sized blood clot in his right atrium at the end of his central line. Another unexpected and scary bump in the road. In order to dissolve the clot we need to give Jedi injectable blood thinners, but we couldn’t start those due to his low platelet count. To bring his platelet count up Jedi had to have a transfusion tonight before he could get his blood thinners. After the transfusion he got his first injection in his abdomen and that did not go well He is so tough and I’ve only seen him cry due to pain when he had to get multiple IVs at the beginning of this journey. Tears streamed down his face as he complained of intense burning at the injection site. That was so tough to watch and then to think that I need to give him these injections twice a day? It will not be easy, but God will hold our hands as we start this new treatment.
My sweet sister in Christ shared this encouragement:
“One of best parts of being a father of little kids is getting to hold their hands. There’s something special about having a little hand hold onto your finger as you go up the steps or walk down the sidewalk together. Toddlers grow up too fast. Soon they won’t want to be holding dad’s hand at all!
Did you know God’s holding your hand? “Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory” (Psalm 73:23-24). Like the best Dad ever, God is always with you. He’s holding your hand. Not just when you’re a little child. All the way through life. All the way until he takes you into glory. What a comfort! Unlike a toddler, may we never grow out of our God holding our hand. No matter what happens this week, God is holding your hand!” -Nathan Nass
 
Dianna, hard to read your last post. Thank you for sharing it. The toll on both Jedi and the family is tremendous. Will continue to pray for Jedi, the family, and the doctors. There are many people praying for Jedi.
 
13
2020
There is Peace in Christ
Journal Entry by Dianna Schaller — 5 hours ago
Last night Jedi was started on steroids to suppress the HLH and control his fevers. Thank the Lord, he has not had a fever since then. After his dose this morning he started feeling even better and ate a really good breakfast. His injection this morning went better with the help of “buzzy” (a vibration pain relief tool). He only had a few tears that time. Daddy gave him a tool on the computer to program some simple tasks, so that kept his mind busy for a while this morning. We also went for a walk to the front desk to mail a letter Jedi wrote to Noah. Jedi also printed out some funny memes to make Noah smile. Noah and Jedi have a special bond and Jedi is counting the days to when Noah gets home. I am still working on getting Noah home by car, so he doesn’t have to quarantine after basic training. I would appreciate prayers for that process.
The doctor came by this afternoon to discuss the blood clot in Jedi’s heart and his biopsy results, as well as the plan going forward. She told us that she had discussed his blood clot with both cardiology and interventional radiology. All parties agreed that the risks associated with attempted removal or clot busting medication were too great to proceed. We will continue with the injections to keep the clot from enlarging and pray his body dissolves it over time. We will have frequent follow up with cardiology to monitor Jedi’s heart.
We also received the unfortunate news that the lymph node showed cancer cells in it. As you can imagine, this was hard news to get and to process. Jedi’s doctor was wonderful with explaining everything and answering our questions. We will begin a new treatment regimen which will include a longer duration of steroids as well as a different combination of chemotherapy targeting his particular type of cancer. Since Jedi is feeling better we are planning to go home tomorrow and return to the clinic on Monday to start his chemotherapy.
Our hope has been and will continue to be focused on our loving Savior’s promises to us. There will continue to be hard days and tears. Jedi and I had some good conversation about acknowledging the tough things, but not dwelling on them or staying in that state of sadness. Dwelling on the negatives just steals our joy from the time we have to be together. We promised to help each other to focus on the positives and the good we see in each day!
This last week has caused a lot of turmoil for our family...I would say it was anything but peaceful. However, my beautiful great-niece, Florence, sang a song to us in a video, reminding us of where we can find true peace. (Unfortunately, I don’t have the video she sent because I’m not good with Snapchat and I lost it) I’m hoping she will sing it again to us, but until that time I found this sweet version to share. May you all find your Peace in Christ! Blessings to you all and thank you so much for walking with us on this journey!
There is peace in Christ
When we learn of Him
Feel the love He felt for us
When He bore our sins
Listen to His words
Let them come alive
If we know Him as He is
There is peace in Christ
He give us hope
When hope is gone
He give us strength
When we can't go on
He give us shelter
In the storms of life
When there's no peace on earth
There is peace in Christ
There is peace in Christ
When we walk with him
Through the streets of Galilee to Jerusalem
Mend the broken hearts
Dry the tear-filled eyes
When we live the way He lives
There is peace in Christ
He give us hope
When hope is gone
He give us strength
When we can't go on
He give us shelter
In the storms of life
When there's no peace on earth
There is peace in Christ
 
I usually get an update on latest caringbridge post from Dianna and post here asap. I'm not going to lie. It brings tears to my eyes to read them. I know each and everyone of us out there probably goes thru hardships at one time or another in there life. My prayers go out to each and everyone of you. !! I went into work at 5:30 am, Searched for some kind of inspirational song to send to Dianna and Patrick. Found this one after listening to many
Thanks once again for everyone that even opened this post and read it, and to to faithful followers, and mostly for all your prayers.
God Bless
Mike
 
I usually get an update on latest caringbridge post from Dianna and post here asap. I'm not going to lie. It brings tears to my eyes to read them. I know each and everyone of us out there probably goes thru hardships at one time or another in there life. My prayers go out to each and everyone of you. !! I went into work at 5:30 am, Searched for some kind of inspirational song to send to Dianna and Patrick. Found this one after listening to many
Thanks once again for everyone that even opened this post and read it, and to to faithful followers, and mostly for all your prayers.
God Bless
Mike
Some of these posts are difficult to read I can’t imagine going through this myself your family is so strong it is inspiring to me and I wait for every post and read them as soon as I get up in the morning
 
We wait in Hope
Journal Entry by Dianna Schaller — 7 hours ago
Jedi was discharged from the hospital last week Thursday. Much to our dismay his fever broke through Saturday morning even with the steroids. Saturday was a bit rough with sporadic fevers and pain, but we were able to manage him at home. Sunday he only had one mild fever and less pain so that was reassuring. This morning he started his new chemo regimen. He was a little dehydrated so was given fluids and then the infusions. Before his last medication his blood pressure was quite elevated. The doctor checked on Jedi and decided he probably had a lot of fluid, so he was given a diuretic. This seemed to work and his blood pressure cane down before we left the clinic. He was a bit tired on his way out of the clinic, but it was a really long day without much rest, so I thought he needed a nap. About 10 minutes into our drive home he started shivering really hard and saying he was super cold. I pulled over to get him a blanket and felt he was actually a bit warm and his lips were purple. I told him I thought we needed to head back to the clinic, so we did and I called the nurses on the way. Of course it took what seemed like an eternity to get back to the clinic, and (I kid you not) there was a semi going the wrong way down the one way street blocking both lanes. I waited for 20 seconds, pulled up next to him and told him he needed to move forward so I could get my kid to the hospital! Thankfully he was able to and we made it to the clinic where the nurse was waiting with a wheelchair. When Jedi got up to the clinic his oxygen saturations were in the 70s and his heart rate was in the 180s. They got him started on oxygen right away and he responded well to that. It wasn’t too long before we were brought over to the PICU for observation and treatment. They took more blood cultures, lab work and gave Jedi antibiotics. He spiked a fever again. They did a chest X-ray, abdomen X-ray, echo, and a CT scan. The X-rays looked reassuring. The echo showed the clot in his heart as stable and his cardiac function is good. We are so thankful for this! The CT scan showed an inflamed pancreas, enlarged spleen and some more enlarged lymph nodes. After two antibiotics and all these tests Jedi’s heart rate is back to normal and he is able to be off the oxygen. He still continued to have pretty significant pain in his abdomen, so was given some medication and is now sleeping. Jedi has not really said much to us since we got over to the hospital. Anyone who knows Jedi understands this is definitely not normal for him. He is really feeling crummy. My heart breaks to see him so miserable as we experience another unexpected and disappointing detour on this journey.
Of course we can’t see into the future, but we know Who can and He promises “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
The hospital plan is to check more labs in about 15 minutes and monitor him through the night. Until then “We wait in hope for the Lord; he is our help and our shield.” Psalms‬ ‭33:20‬
Please keep praying fervently for our sweet little Jedi! Thank you and love to you all!
 
I'm not sure how to ask this next question ? I know to some it;s getting hard to follow ? Read ? if preferred ? PM me for updates ? continue with Post ? please let me know your thoughts ? I'll do my best to provide to whatever is best for readers. Thanks to all
MGMIAM
 
You do what’s best for you and Jedi. I sincerely appreciate you sharing Jedi with us. I lost a nephew (16) to cancer. I thought of him as mine own well before I had my own children. It is a blessing to me to be able to pray for this young man and I am one who wants to see him kick cancer’s butt. I have not commented on this until now but I have been praying for him since I found this thread. No matter what you decide I will continue to pray for him.
 
I will trust in You
Journal Entry by Dianna Schaller — 7 hours ago
Jedi has been improving clinically since we arrived to the PICU Monday afternoon. His belly pain is much less and his fluid retention is slowly improving. The pediatric GI doctor came to see us today and was wonderful at answering all our questions. Although Jedi does have some irritation in his GI tract, likely due to the effects of the chemotherapy, it is nothing that warrants further testing or examination at this time. The pancreatitis is something we need to manage with diet and time.
The most immediate struggle is still with high blood pressure. They have been trying to control it with medication, but it only improves slightly and goes right back up long before the next dose is due. They are still not exactly sure what is causing the high blood pressure, but it may be that the chemo has caused changes in his kidneys. His kidney function tests are good overall, so that is reassuring. Regardless of the cause, we need to control the pressures, so they are working on which medications and dosages would be best. These are not easy things to manage, so please help us by praying for those decisions.
Needless to say Jedi has had a rough last couple of weeks. This hospitalization especially has taken a bit of wind from our sunshine boy’s sails. We are so thankful that he opens up to us regarding his feelings and his struggles. I can’t say I haven’t cried right along with him at times. This is tough stuff. Covid restrictions make it more difficult, because without them at least his brothers could come visit. I know this would brighten his day so much. We all want to be home, but we know this is where we need to be for now. God and His angels aren’t restricted by hospital regulations and because of that we have the best roommates
As Jedi was falling asleep tonight he whispered to me, “I’m going to listen to daddy and give it all up to God. Tomorrow is a new day.” And then to throw in a little Jedi humor he continued by saying, “Dad’s a good man. You made a good choice, mama!”
Just as Jedi trusts his earthly father, we all must trust that no matter what the trials, our Heavenly Father is right by our sides. And even though He may not be moving the mountains we wish He would, we will trust in Him and His perfect plan!
Thank you all for continuing to lift our sweet Jedi warrior up in prayer! Your encouragement and support mean the world to Jedi and to us
Trust in you
Letting go of every single dream
I lay each one down at Your feet
Every moment of my wandering
Never changes what You see
I try to win this war
I confess, my hands are weary, I need Your rest
Mighty warrior, king of the fight
No matter what I face You're by my side
Truth is, You know what tomorrow brings
There's not a day ahead You have not seen
So let all things be my life and breath
I want what You want Lord and nothing less
You are my strength and comfort
You are my steady hand
You are my firm foudation
The rock on which I stand
Your ways are always higher
Your plans are always good
There's not a place where I'll go
You've not already stood
When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You
 
Our prayers are still with you and your family and will continue to be so. God Bless you all and give you strength.
 

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