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In honor of Jer

In honor of Jeremy Mains – He fought the good fight and refused to be discouraged by every trial he faced during his valiant battle. Here he is, back in the hospital in July for another unexpected month long stay with full facial paralysis demonstrating his fighting spirit. This is why I love this man so much….  ~~ Angela


Saying Goodbye

May God bless our precious children. May they always remember their Papa who loved them tremendously – so much so he insisted in working fewer hours, making less money just to be with us. His amazing five month fight was all for us. May they never forget that. ~~ Angela1454997_10200983442373787_2119600993_n

Beautiful light …

The most beautiful light is getting dimmer. The lymphoma has rapidly progressed in Jeremy’s brain and doctors are unable to treat it. The ventilator is doing 100% of the work meaning he is on life support. Doctors say we have hours, maybe days left. We are keeping him comfortable, holding his hand, staying by his side, telling him we love him, over and over again (what else is there to say?)

My mom and brother are bringing our children to the hospital to see their Papa one last time and say goodbye.

God be with us during these precious hours.  ~~ Angela

It has been several weeks since Jeremy could talk

It has been several weeks since Jeremy could talk. The trach limits his ability to produce sound, while his facial paralysis makes it difficult to read his lips. It feels especially cruel to me that a man like Jeremy, who typically has a lot to say, is unable to fully express himself.

I won’t ever forget one of the last things he said to me. It was the last time he came off the ventilator for the second time (before he went on the ventilator for a third time and straight to the trach,). Initially, after coming off the ventilator he was able to talk very clearly for several hours until he was no longer able to keep his throat clear. For those precious hours we could talk and know how fully present he is mentally, in spite of his physical appearance.

During that last period, one of the first things Jeremy said to me was “Hey, you should see if the hospital has another bed that we could bring in here. That way you could sleep there and we could hold hands and be together all night.” I smiled at the thought and wondered if Jeremy was completely lucid knowing there was no way another bed would fit in that room. He continued talking and resting for the next few hours but towards the evening he said “Don’t forget about what I said about the bed.”

That night I slept on the sofa in the room and by morning Jeremy was struggling to breath and unable to communicate. We haven’t heard his voice since.

I won’t forget that last conversation. I’m praying we have the chance to talk again.

~~ Angela

Big prayer request today

They are doing biopsies on two of Jeremy’s swollen lymph nodes. If the results show that the same lymphoma that Jeremy has had – Mantle Cell – is present, the doctor has a treatment plan. If the lymphoma has changed in any way, there are not a lot of treatment options. We are praying for speedy test results that allow doctors the opportunity to treat Jeremy. He is still fighting. Please keep praying.

~~ Angela

The prayer of “ventilation”

Long ago, my mother taught me about the prayer of “ventilation.” I had a little ventilation session with the Lord last night.

This morning I am taking the commuter into the city to spend the day with Jeremy, our son who is at Rush University Hospital. Last night, in the middle of the nighttime hours, I asked God to give me the strength and tenacity to advocate for Jer and not to be overwhelmed by the hospital medical extravaganza or the frail condition of my 41-year old child. (Those of you who have endured a long, seeming unending hospital stay will understand what I mean.) My good intentions often collapse when going for the words doctors are not saying. Politeness is not necessarily an advantage when grilling shift change nurses; sometimes pertinent information gets lost in the passing along of patient care duties.

In fact, on the last visit, David had a tachycardia spell (rapid heartbeat forecasted by cold sweats and feeling faint), a condition we thought was under control. In no time, after stretching out on a couch in the waiting room, five nurses (count them) had rolled a heart monitor, called the ER, ordered a chair to take him down, and were ready to paste him up to additional devices to send him along with a complete reading. His heart was pacing off at 188 beats per minute! But as usually happens, by the time every one had gathered in concern, his revving system was already cooling down. The visitor in the room who was about David’s age shouted, “Hey! How do I get in on this kind of attention?” Needless to say, David has been assigned other duties in our family crises; these hospital visits are not for the fainthearted.

Actually, what happened in the middle of last night was that I became angry—really angry and basically told God off. The diatribe went something like this: All right, Big Guy, I’m tired of being your press agent. You’ve said that you keep your promises. You’ve said that you are the Healer. You’ve spoken to my heart that Jer will live. You’ve said that those who put their trust in you will be rewarded. And yet, we have hardly had any good news in this long, almost six month journey through cancer. I have no problem broadcasting about your wondrous mercies WHEN WE SEE YOUR WONDROUS MERCIES! But where are they? Just exactly where are they?

This harangue went on and on. And I am not ashamed to admit it. Through the years—seven decades—I’ve learned that God is big enough to absorb my anger. Through the years, I’ve learned that He who knows everything knows about my deep down hidden rage and angst regarding this freakish disease fandango. Through the days of my life, I’ve come to understand that He won’t move, however He decides He will move, until I get real with Him.

Truth is, if I were God, I’d assign the killing diseases to the cads of the earth, to the deadbeat fathers who are not really interested in their children. I’d make sure that the alcoholics, the, beaters, the abusers all came down with blastic mantle cell lymphoma as a means of purifying the genetic pool.

I would not allow the good fathers (few enough of them as it is), those who take piano lessons with their daughters, who speak only Spanish so their children will grow up bilingual, who delight in planning birthday parties, who are passionate about the plight of the wretched of the earth, who read three books every night, who have established a bedtime ritual that includes prayers and putting money in a bank for the poor, will be able to explain the ruling dynasties of China, who carry on delightfully funny conversations with grandmothers (me) while their daughter takes Karate classes the only blonde child in the class) to come down with an incurable cancer.

My anger fits under the category penned by the psalmist, “In the evening, in the morning and at noonday, I will complain and lament and he will hear my voice.” Psalm 67:2.
I’m on the train, writing this, and I am still really angry.

I think God has answered my midnight prayer. Pray that I’ll stay angry all through this hospital visit. Pray that when tenderness makes me weak, I’ll draw on this angry determination.

~~ Karen Mains

Please keep praying for us

Please keep praying for us, especially Jeremy. These are hard days. We are still waiting on test results in order for the doctors to develop a treatment plan. The waiting is gruesome.

Thank you for your prayers for Jeremy, the medical team, and those of us walking alongside him on this very difficult journey.

Yet another day that I left my love in the ICU

Yet another day that I left my love in the ICU. He is stable, and my kids need me at home, but these days I find it increasingly difficult to leave his side.

At home, the kids and I ate pizza for dinner. There were just a few pieces left and I asked if everyone was done before putting it away. Eliana said, “Wait, Mama. Save this piece. This is a special piece for Papa.” She then cut up a pear (also for Papa) and said “Mama, you have to tell a Papa I cut the pear all by myself and I didn’t cut my finger, ok? Tell him that the next time you go to the hospital.”

It has been nearly two month since our children saw their Papa and he saw them in the flesh. I pray a day will come soon when our family can be together in the same room once again.

~~ Angela

At 2am we were transferred back to the ICU

At 2am we were transferred back to the ICU. Jeremy’s trach isn’t working properly, and, as a result, he aspirated again. It wasn’t a crisis (he had aspirated just a few nights ago) but his nurse last night on the floor felt she couldn’t manage him and her other patients (who were also in some sort of crisis) so we were transferred out. I haven’t talked with the doctors yet so I don’t yet know the plan.

My biggest concern about being back in the ICU is that it could delay treatment and other important components of rehabilitation. Thank you for your prayers.



Nighttime Watches

Years ago, I spoke for a woman’s retreat in a New England church with the quintessential boxed-in-pews, two-storied mullioned windows and elevated pulpit. That Sunday was Mother’s Day, and the pastor preached on the prophecy given by righteous and devout Simeon to Mary, the mother of Jesus, “. . .and a sword shall pierce through your soul also. . .”

This may seem an incongruous choice for a text on Mother’s Day, but it was actually beautifully delivered, and I have never forgotten that for many women the celebration of this special day is actually a source of extraordinary pain. Their own mothers were less than adequate, or they had no mother, or they were never able to be a mother, or they have tried and have remained infertile—you can sense the pain here. Some women, I’ve discovered just avoid that Sunday in churches.
The truth remains that being a mother is fraught with soul-piercing moments. A first infant’s first temperature. A rolling baby’s sudden fall from the bed. The broken arm. The bully on the playground. A mean teacher. Being the only child on the block not invited to a birthday party. Puzzling ill-mannered behavior childish behavior (Are we raising a monster?). A grandparent who plays favorites with the grandchildren. The list is endless. How many times do we feel that blow to the breastbone?

Obviously, what our family is going through with Jeremy Mains, our son, is one of those “sword piercing through your soul also” moments. I woke last week about 3:00 in the morning with a pain through my sternum that was searing.

These are the moments when I work things out with God. “Who is in control of this cancer scenario?” I ask myself. “The doctors? The international lymphoma consortium that is consulting on his case? The medical staff on the hematology oncology or the ICU floors?” No, I remind myself God is all-powerful and can work through the maze of scientific curative systems that modern technology has devised.

Still hurting, I turned toward the warm body of my sleeping husband and in a little bit of time, the pain went away and I rested in the fact that although I always don’t understand the mysterious workings of the Almighty, His workings are always for good, not for ill, for beauty, not for ugliness, for love, not for misery.

Checking the posts on Facebook (the comments and prayers are always comforting), I came upon one from Lisa Vischer, “Holding every word close to my heart and lifting you up even now on the night watches. Lord Jesus, in their sleep, bless Jeremy and each member of his family with deep rest, divine encouragement, expansive grace, healing tenderness, limitless renewal, untouchable hope, ministering presence, powerful testimony, strength for tomorrow, and untouchable peace. Fill them up this night with all of WHO YOU ARE. Amen”

Sometimes when others are going through catastrophe, our hearts are moved with compassion. How often, however, I hear people say, “I just don’t know what to do.” Believe me, being in the middle of a catastrophic situation, I want to encourage you to just do what is in your heart to do, even if it seems so inadequate in comparison with the magnitude of the dilemma. That prod, I have found, is often a divine nudge. While thanking Lisa for her prayer, I realized that she was awake at the same time I was awake and that God had impressed us upon her heart.

Amazing, isn’t it, that there is a spiritual web that connects us all in ways we cannot understand and once in a while—once in a while—like this night watch prayer, we get a glimpse of how connected we really are. My pain went away while Lisa prayed.

The simplest actions often touch the deepest places in our wounded souls and help us to bear the burden. A note in the mail. A comment after a Facebook post. A meal brought in so that we can have something wholesome to eat the next day. Every week, almost, we’ve received enough money in the mail to pay for that week’s gas and parking on the visits to Rush hospital.

A group of Nigerian pastors prayed down healing prayers over the phone while Joel held the receiver to Jeremy’s ear and laid his hands on his brother’s body. Cathie Clark left a potted orchid on my desk which I brought home and placed on the table in front of the living room fireplace—it soothes me every time I glance at it. Our older grandchildren “like” our posts so that I know they are following our difficult journey. Medical friends take the time to answer our questions about procedures and terminologies that are outside of our everyday lexicon.

This is our journey, but we are not alone. We are weary and wounded, but someone, somewhere in the middle of the night is holding our pain. It is the condition of the human journey. But we have not been abandoned, forgotten or neglected.

I have been here before. My life has been shattered many times. But I am old enough and wise enough to know that we will not be destroyed. Good will come out of these bad days. We will rise again out of desolation. Laughter will return. A bond will draw us together stronger than we have ever been. And one day, in the middle of the night, I will hold to my heart a friend who is in pain and sorrow and somehow, in ways indiscernable, my prayer will ease the icepick slicing of a soul.
Love is all around.

~~ Karen Mains

The Good, The Bad and The Truth

The Good:
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.

The Bad:
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.

The Truth:
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.

~~ Angela

A opportunity to help

Dear Friends,

I recently learned of another West Chicago community member going through a similar situation as Jeremy. They are now at the point of looking for a bone marrow donor. I don’t know this family personally, but have a profound understanding of what they must be experiencing. Many people have asked us how they could be tested to see if they are a match for Jeremy and while we are not at the place right now, this family is. They are organizing a bone marrow donor drive on the Wednesday before Thanksgiving in West Chicago. Please strongly consider participating in this. Being a bone marrow donor is not a scary thing – much has changed in the last few years. Donating bone marrow is just slightly more complicated than donating blood. Please participate in this potentially life saving opportunity.

May God be with Jeremy during this trip he is on

Last night I dreamt I woke up, alarmed Jeremy wasn’t in bed next to me, wondering where he was. He’d been gone for so long. I got up anxiously and looked out our bedroom window onto our driveway in time to see Jeremy’s car pull up. He got out, looked amazing and was carry gifts and luggage up to our front door. I ran out to him in the cold, in my nightgown, angry he’d been gone for so long but thrilled he had come home. Throwing my arms around him, we embraced and I said “Where have you been?”. Still embracing he replied, “I told you I was going on a trip. I’ve been to Boston and a bunch of other places. I’m sorry I was gone longer than expected. Look what I brought back for everyone.” I held on to him tightly, relieved he was back, safe at home.

Then I woke up and for 10 or 15 cruel seconds I was still in Jeremy’s arms as I left my dreams and returned to reality.

May God be with Jeremy during this trip he is on, much longer than we expected. May he return to us swiftly, bringing stories from his journey, gifts for us all, and most importantly his strong, warm embrace.

~~ Angela

Thank you for being part of our journey

We’ve been walking on a tight rope for 134 days. That’s how long it has been since Jeremy was first diagnosed with lymphoma. Right from the start our course was difficult and we have been players in a very serious balancing act. When Jeremy was first diagnosed, we were told he would’ve died within 24 hours had we not gone to the ER. We were told that his kidneys had failed and while the doctors believed they could help Jeremy, they didn’t know if time would be on their side. They didn’t know if Jeremy’s kidneys would recover so that Jeremy could start chemotherapy. Right from those early days, we’ve been given the message, “Yes, there is hope. We just don’t know if X,Y or Z will allow us to do what we need.”

We’ve been playing this balancing act for five months. The new dilemma: Jeremy’s lymphoma has returned but again he needs to get stronger, his counts need to recover, and he needs to be more stable in order for the doctors to attack the lymphoma. And the doctors continue to say “We have not hit a wall. There is still hope. We just don’t know how everything will play out.” It is hard to fully comprehend what the doctors are saying, especially knowing how much Jeremy has been through, how frail and weak he looks.

Hope is a double-edged sword. Hope is what gets me out of bed in the morning. It’s what gives me the energy to go through the day knowing there is a chance of good things to come. It is also the thing that I cling to so tightly, I can’t let go, I can’t enter “the dark side” and give up. It makes me keep going even when my body, mind and spirit are so very tired and unable to move. We can’t give up as long as we still have it. And for those of you who have had hope, you know that it doesn’t come in sizes. Hope is all or nothing.

As we enter this new phase and walk this new tight rope, our hope remains. Someday we will look back on these days, on the other side of all of this with whatever the other side looks like, and we will see that hope shining brightly. We will see this as a time of grace and mercy, of sufficiency, even in the midst of some of the most dangerous storms. Someday we will remember these days as hard and difficult but also special and wonderful, as we get to intimately experience the hand of God every single day. Like someone who lives through an epic battle or natural disaster, we will see this path behind us and think “Only by the grace of God did we make it through.” As hindsight is 20/20, we will look back on these days and see more clearly the miracles and mercies much more profoundly than we can see them now. And we will continue to thank him for His goodness to us on even our darkest days.

Thank you for praying with us as we walk this fine line. Pray for Jeremy’s strength, pray for comfort to his mind and body. Pray that even though he is unable to talk (and desperately wants to) he is content and patient with those of us trying hard to understand his needs. Pray he can use this time for special conversations with God. He is a strong, strong man. It is miracle he is still fighting, going strong and mentally engaged. God is with him and using this for his glory in all of our lives. Thank you for being a part of that.

~~ Angela

Thank You for Trusting This Family with This Sorrow

Yesterday, Monday October 22, I stayed with Jeremy in his room in ICU from about 11:30 – 7:45. When alone, it is often hard to go into his room because he is so diminished. Once, during the chemo treatment cycles, he said to me, “I look like Frankenstein.” At that time, I thought, No darling, I think we’re more in the night of the zombie phase. As the chemo toxicity began affecting him more and more, he stumbled as he walked, lurching and falling. Believe me, there were terrifying moments. I had to work through my resentment at seeing young men on the chemo floors jauntily pushing their intravenous equipment along the hallways. Why were they recovering from chemo so quickly and why was Jeremy’s recovery more of a regression?

Without being crass or uncaring, because my heart is breaking, we are now more at the Auschwitz survivor stage. And because so much of the news has been increasingly disheartening (I can’t count how many times I’ve thought, He can’t possibly live through this—this treatment, this infection, these spiking fevers)—sometimes I’ve dreaded what we’d face when we entered Jeremy’s room this day (whichever day). It has been a testament to your prayers, to Angela’s stamina (not that she hasn’t had wretched and wearying moments), to Jeremy’s amazing determination, and to the divine gift of buoyant hope.

I’ve discovered a prayer that has helped me push through the dread. The prayer is this: Thank you loving Heavenly Father for trusting this family with this suffering and this sorrow.
Two weeks ago, at the last moment, I decided, with a push from family members, that I needed to attend the board meeting of Medical Ambassadors International in Modesto, CA. This meant that family and friends would have to cover my rotation at the hospital; frankly, my leaving would put extra pressure on all of them.

I travel standby, compliments of a friend who was a former airline employee, so I had plenty of time to work things out with God regarding my son. In Catholic theology, there is a much clearer understanding of the concept of redemptive suffering—that those who suffer can use that pain to understand the passion of Jesus for this world and as Scripture says, “to fill up the suffering of Christ. . .” This is a concept that I don’t think I will ever completely comprehend. However, I don’t want to be self-centered with the suffering Jeremy and Angela are experiencing or that our extended family (friends included) are feeling. Anne Morrow Lindberg once said that pain is the most individualizing thing in the world. It can focus our feelings on ourselves and our problems to the exclusion of everyone else who is also in agony. I do not want this suffering to make me narcissistic.

So I began to ask that the prayers for my son would also be applied to that Muslim father in Syria, for instance, who news photographers caught carrying the dead body of his five-year-old boy. As I moved from gate to gate on my Chicago to San Francisco transit (eventually four in all), I lifted to God the laments of all those caught in tragedy and distress and agony and confusion—as many as came to mind. I also discovered an error in my thinking: I had slipped into a kind of urgency that insisted I was an essential part of Jeremy’s healing. Attitude correction: I was to be a loving presence to my son, but his progress, his healing, his fate were totally in the hands of his Heavenly Father, who I know loves all my children and grandchildren more than I can fathom.

Walking down the gangway, I prayed that prayer (or perhaps the Holy Spirit spoke it in me), “Lord, thank you for trusting this family with this sorrow and this distress. Thank you for thinking we would be spiritually mature enough to walk this Golgotha road without bringing shame and dishonor to your NAME.”

Yesterday, when I arrived at ICU, Angela and the nurse, Samantha, had exercised Jeremy in bed; Samantha and I continued so until the physical therapist arrived. Much of what she would normally do had been done, so she proceeded to assist Jeremy to sit upright on the side of his bed. Huge progress.

Now remember, we are in the “Auschwitz survivor” stage, but the ICU staff and the ICU doctors are pleased and excited. “He’s really doing well,” they report. No infection in his body or in the lymph node biopsy. (Which is still a hard knot in front of one ear.) He’s breathing better on his own. His vital signs are good, blood pressure is under control. His white cell count is up to 4.5. ICU is putting him on what they hope is a better G-tube feeding plan. He looks healthier. And on and on. Instead of his eyes being open as they have been for the better part of months, they are now closed. The ophthalmologist who checked him while I was there last week mentioned stitching his eyes closed and when I groaned, she suggested we could try tape first (!) But it looks as though something or Someone else got there before her.

I am reminded that there are things on heaven and earth we know not of. I am reminded that we are living in the middle of a mystery—draining and frustrating and terrifying and wondrous—that is beyond our understanding.

I phone David with the ICU report. He can’t talk because he is weeping, “It’s just means so much to get some good news.”

Yesterday, I worked for a long time on Jeremy’s right hand, which is weaker than his left hand. The therapist taught me how to do a flex and stretch activity. After several of these gentle exercises, I gave him a child’s hand ball that Angela had left in the room. This kept the fingers from curling again. I will probably always carry this image in my mind of Jeremy at 41 years of age, resting—his mouth open, his eyes closed, and his right hand holding the child’s ball. The incongruities are hilarious, tender, frightening, exhausting.

“Jeremy,” I say, “Close your mouth.” For months, due to the bi-lateral facial droop, he has not been able to do this; then there was the respirator which forced his mouth open for days, now the tracheotomy—enough said. The therapist has taught me that we need to get the body back into its normal habits; it has been so violated by necessary medical procedures. When Jer closes his mouth, which he can do by himself—what a joy!—he breathes through his nose, saliva forms in his mouth and he swallows. I gently remind him, “Now Jer, I’m not nagging. Just reminding you that we are giving signals to the neurological and muscular apparatus that we want to go to normal again,”

After some hours of all this, my son rests; worn out, I rest. Jeremy lifts his left hand over his head to the ceiling. Is he stretching? Is he seeing visions? Is he counting, as he did before he became so ill with this toxemia, the dots in the ceiling tiles? I can see his tongue move in his mouth. Suddenly, I suspect, though I can’t prove it, that he is praying.

Thank you, Father, for trusting this family with this sorrow.

Your prayers for us are being answered. However, the hematology oncologists are searching for lymphoma—a bone marrow test today; another spinal fluid tap on Thursday. Our requests are obvious.

There are more things in heaven and earth than even great medical teams can know. Let us move into mystery.

~~ Karen Mains

Seeing Jeremy’s Personality Shining Through Has Been One of the Great Highlights of These Recent Weeks

This morning while I was talking with Jeremy my brother, Dan Kinder, entered the room. It was a total surprise. He had spent Friday afternoon and evening making the long drive from Nashville, TN to Chicago. It was great to have him hang out with Jeremy and I and spend the afternoon with our children. Thanks to having the extra help, we took the kids to Sunny Acres for the rides. It was a sweet afternoon. Jeremy wants me to take our kids to church tomorrow morning, so Dan will go back to the hospital to hang out with Jer in the morning.

Dan hadn’t seen Jeremy in about two months and a lot has changed. But Dan will say Jeremy was better than he was expecting and in spite of his speaking limitations, he is mentally 100% here and you can still see Jeremy’s personality shining through.

It has been a good day with special time with Jeremy, a sweet surprise visit, and a fun afternoon with the kiddos…

Seeing Jeremy’s personality shining through has been one of the great highlights of these recent weeks. So grateful for God’s grace.



I am Grateful My Mom is Staying With us Again

I am grateful my mom is staying with us again, running things at my house, keeping things clean, being sure laundry is done, feeding the animals, taking out the trash and most importantly, taking care of the kids and managing their mornings and evenings as they get ready for school and do educational activities each evening. It is a ton of work multiplied since it is being done far from her home in TN, far from my father, her friends, her life. Because she is here I am able to be with Jeremy every single day. And I need that. I am spending tonight in the ICU and I know I will sleep so much better here knowing he’s ok. Plus, he’s so much more communicative – the thought of missing our interactions is just too dreadful.

Thanks, Mom, for being here. I don’t know how I’d manage all of this without you here.



We Have Not Received Any News Today Beyond What The Doctors Believe They Can Manage. God is Good.

Met with the ICU doctor. She feels Jeremy should resume the tube feeds and get meds by his feeding tube. The X-rays gave no indication that he wouldn’t be able to handle that. This is good news.

Jeremy has spent most of the day off the ventilator. They don’t have any plans to put him back on unless he seems to need it but overall he is doing well. I don’t expect him to get fitted with a cap for his trach over the weekend but am glad the doctors are anticipating Jeremy will be strong enough not to need the ventilator for now.

We are still in the place of watching and waiting but we have not received any news today beyond what the doctors believe they can manage. God is good.



We pray for strength to endure

Met with the oncologist. There is evidence of lymphoma in Jeremy’s gut, same spot as where it was when first diagnosed. It is not exploding but they are monitoring it carefully. Jeremy needs to get stronger before they can give him any meds or chemo. Please pray he gets strong enough quickly and the lymphoma does not progress.

I am still waiting to talk to the ICU doctor about the treatment plan for Jeremy’s feeding tube. With the obstructed bowel, Jeremy isn’t able to get the nutrition he needs because it just sits in his stomach. They can put another tube directly in his gut that would allow him to process food/meds. This would involve a surgical procedure that Jeremy needs to be strong enough to tolerate. Please pray he regains his strength and can have this procedure. There are so many meds he isn’t getting because they are only available in a pill form, good pills like pain relievers…

Jeremy also needs to be able to breath on his own. His lungs are strong but when he gets agitated he breathes harder, making the doctors put him on the ventilator. Each time he is on the ventilator it sets us back from getting his trach fitted with a cap so he can talk. And he desperately wants to talk. He has a lot to say .

The docs all say Jeremy is looking a lot better, a lot stronger today and they are encouraged. The oncologist was very clear that in spite of the evidence of disease, they are not giving up on him, there is still a lot of reason to keep fighting.

Right now we pray for strength to endure, strength to handle important procedures, strength to breathe so a Jeremy can regain his voice, strength to recover, strength to overcome. Thank you for joining us in these prayers. His mercies are new every morning, every hour, every minute…During these difficult days, we get to see and experience each new mercy in very a real way.

~~ Angela

God is good–all the time

Prayers with every breath–waking or sleeping. Just brought David back from cataract surgery; doing OK there. Yesterday, with Cristobal A., David told a baseball joke and Jeremy laughed from his belly (which caused him to cough causing the nurse concern about aspirating). Chris was great–so hopeful about his own brother, Dan’s long year-and-a-half journey through a battle with death. Spoke Spanish to Jer with Jer squeezing hand. Physical therapist, Jennifer, whom I adore ,worked with Jer and interpreted his body language to us and continued to teach us how to work with him without harming his fragile body. How dreadful to be waiting, then I hear this quiet word, Jeremy is OK. No matter what the doctors say, Jeremy is OK. I have no idea what that means, but it certainly calms my spirit. Love you, Angela–the only time I get mad about this is when I think of what you are having to manage. God is good–all the time.

~~ David AndKaren Mains