Jeremy has been stable for several days. He is resting “on the floor”, out of the ICU. His vitals look good, he is breathing well on the trach, no infections, no fevers. He is in a good place to begin healing. He is still unable to talk but he communicates through hand squeezes and thumbs up/down. He is mentally completely present. The other day with my mother in-law he spelled out the word “walk”, something he wanted to do. Today when he was working with the occupational therapist he sat (with support) for 15 minutes, which was pretty amazing – the longest he’s been able to sit up in weeks. He has been moving around in the bed much more. To prevent foot drop, he is wearing a heavy boot on one foot. Today I thought they had removed it because he was moving his leg so much and we – the nurse, occupational therapist, and myself – were all surprised it was still on his foot and he was strong enough to move his leg in spite of it. He is on a high protein diet to increase his nutrition which will aid in healing. A bed sore he developed in the ICU is healing well. A CT scan of his brain conducted just a few days ago show no additional changes from early September, meaning the toxicity he is experiencing isn’t getting worse. His white counts and all the other important numbers are increasing or stable (not decreasing) indicating he is getting much stronger. If he were able to enter a rehabilitation phase and we had all the time in the world to dedicate to his recovery, it appears we are in a good place to start. And all of this is very encouraging.
Over the past few days, the evidence of the lymphoma spreading has become much more apparent. He has swollen lymph nodes at the base of his ear and in his neck. The CT scan showed evidence of lymphoma in his gut, the same place as where it had been before. A bone marrow biopsy performed last Tuesday was negative (conclusively) meaning no lymphoma cells were present there. However, Jeremy’s lymphoma is so aggressive it could easily be there now. The most difficult news is that for the first time in many months there is conclusive evidence that lymphoma cells are present in Jeremy’s spinal fluid, indicating it is present in his central nervous system. This is extremely serious.
Right now they are performing various tests and biopsies to gather more information about the lymphoma as it may be different than before due to his previous treatments. They need more information before developing a treatment plan. However, we are now at a place where the doctors have asked us to really weigh the pros and cons of additional treatment given Jeremy’s current status. He is in a much more dangerous position than when we began this journey and the detrimental risks associated with any treatment options are very high. Jeremy will be more prone to infection, he may have more long-term or even permanent impacts from the treatment if we do anything else in his current state.
Right now Jeremy, who is five-eleven, is 138 pounds. He is breathing through a trach and has a feeding tube. Do to the facial paralysis, he is unable to open his eyes and unable to close his mouth. He can’t function independently at all. First impressions of him in his current state are not good. His current clinical presentation is not good. Beginning treatment at this time does not seem good. Hence, the doctor taking time to pause and assess what it means to continue with treatment due to the presence of lymphoma in Jeremy’s current state.
We are in the same place we have been for five months – in God’s hands. While this is another gruesome scenario, it doesn’t change the fact that we are trusting in God in every step of this journey. He is here, present with us. There isn’t a better place to be.
God gave Jeremy incredible strength. His clinical presentation has been terrible from the start. I can’t tell you how many times someone has said “Your chart says one thing, but you seem different. Talking/Seeing you in person doesn’t match what I see when I read your chart. You’re better than what I’m reading.” This is just to say that while Jeremy’s clinical presentation is bad, there is something else (can we say the Hand of God) giving him the strength to perform outside the limitations of his clinical presentation and in that we find great hope. Jeremy is a living miracle. In all honesty, we should not have made it this far. We believe God has brought us through very scary situations to this point. And, we believe we have farther to go on this journey.
Thousands of people all over the world are praying for Jeremy. We believe those prayers are being honored. We are being sustained by them. We know God is responding with compassion and mercy on us. We have heard from many people praying for Jeremy who have shared with us a sense of peace, of healing and of hope. There seems to be a unified sense that God is carrying Jeremy through this, no matter how dark things seem to be.
When I pray for Jeremy I get a very strong sense of peace and a very strong sense that everything will be OK, not to worry. I also get the sense that we are not going to be leaving this journey any time soon, we will be in this place for quite awhile longer, but not to worry. There is still hope. And I am clinging to that Hope now.
I don’t know what will happen. I don’t know what happens on the next page of this story but we have peace, we have hope and we have the prayers of many.
Jeremy knows where we are in terms of moving forward with treatment and the potential consequences of that. We are still waiting for information to know exactly what the risks are based on what treatment seems best. Jeremy and I (and his family and everyone else) will be praying for wisdom in these days to come. After our initial conversation, Jeremy indicated he was still fighting and still wanted to pursue treatment in spite of the potential risks. Given what we’ve been through, the way God has brought us through other scary scenarios, I am with Jeremy. But we continue to pray, to seek wisdom, to ask for mercy, to ask for acceptance, to know which way to go from here.
The doctor told me today that if it were just up to him, of course he would treat Jeremy. That’s what he would do. So we are waiting for what treatment will look like, to learn more about the risks. There are less toxic options we can use that would allow Jeremy to recover and heal while keeping the lymphoma in check. However, Jeremy will need treatment for the lymphoma in his central nervous system (brain) and we have limited options on how to treat that without the toxicity.
Please pray for us. Pray for Jeremy’s continued healing and rehabilitation while tests are being done. Pray for wisdom for the doctors as they determine a treatment plan. Pray for us as we make difficult decisions. Pray for Jeremy’s family and friends as we walk alongside him through this. Pray Jeremy has strength to continue on. Pray for our young children who don’t understand what is happening but know their Papa is in the hospital and their Mama is gone quite a lot. Thank God for His continued mercy on us as we continue on this journey. Pray for a continuation of endurance, strength and peace. Thank you.