MGMIAM
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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
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