Monthly Archives: September 2013

Mains Family Secret Code

In the ICU with my brother, Jeremy. Been here with him through the night. He is hooked up to a ventilator. He is very frail. Very weal. At this point, his only form of communication is a squeeze of the hand or a shaky thumbs-up. A pastor was in here earlier praying for Jeremy in Spanish (which Jeremy speaks fluently). In the middle of his prayer,he stopped, looked up at me and said, “I think he understands me. He’s squeezing my hand”

The Mains family has always had our simple secret code that goes along with hand squeezes. Three short squeezes instantly conveys the message I LOVE YOU. For the longest time I thought every family knew this “code”. Angela told me she didn’t know it till she met Jeremy. My husband, Doug, had said the same. Like us, Jeremy and Angela have handed down this tradition to their children: 3 short squeezes always means I LOVE YOU. As I’ve been here comforting Jer through the night, I slip my hand into his and whisper. “Hi Jer, it’s Melissa. I’m right here. I’ll be with you throughout the night. You’re not alone. I’m praying for you.” Instantly, I feel my brother squeeze my hand 3 times. “I love you too, Jer. Love you too.”

~~ Melissa Mains-Timberlake

Things are Moving in the Right Direction but Slowly.

Jeremy’s heart rate briefly went down to 103 but is back up in the 110′s. They plan to do an MRI at 5. His oxygen levels have been reduced by half, meaning he is doing more work than before and the ventilator is doing less for him. Things are moving in the right direction but slowly.

Right now it seems we are dealing with two things: 1) Jeremy most likely has pneumonia which has given him the fever and compromised his lungs. 2) Jeremy is having neurological issues that are severe. As crazy as this sounds we are praying this is just toxicity to the chemotherapy and not cancer progression. We hope test results will be available tomorrow that will inform a treatment plan. Please pray for a positive outcome to both of these scary scenarios.

~~ Angela

Early Start of a New Day

Here we are at 4am, the early start of a new day. Jeremy is continuing to make very slow improvements. Heart rate is now in the 120s, temp is about 100.6. Still on the ventilator and heavily sedated. After a night of tests and visits from doctor we still don’t have any specific answers.

~~ Angela

Lots of tests done, still no answers

Lots of tests done, still no answers. Jeremy’s fever responded well to the Tylenol. His heartbeat went from 188 to high 140s (normal is 60-100) and his still on the ventilator, which means he is unable to talk. Thanks for your continued prayers. We are taking this one baby step at a time.

~~ Angela

My brother is fighting the good fight

In the last few weeks I was able to spend time in Chicago with my brother, Jeremy Mains. I visited with him numerous times — five of those in the ER, ICU or Kellogg Wing at Rush Medical Center, one for a visit with him, his wife Angela and his kids at Revolutionary War days at Cantigny in Winfield, IL, another at his home in West Chicago. It was something my wife, Carmel, encouraged me to do, having seen cancer invade her family years ago, and it gave my folks an opportunity to recharge their batteries for the next long phase of being supportive and helpful to Jeremy, Angela, their kids, and the whole family.

Every one of those moments was a incredible chance to spend time together, and reflect on the quality of his Christian character, for Jeremy treats everyone around him with concern and regard and kindness, despite being heavily beat way down by his chemo treatments, compromised by ongoing fevers, struggling with facial paralysis that prevents him from normal speaking, eating or drinking, and just plain living on the edge, trying to overcome complications that arise from battling this aggressive disease called Blastic Mantle Cell Lymphoma. Most of us would be grousing, griping, whining or complaining, or just screaming aloud, but he is fighting the good fight.

He’s an incredible guy and I’m sharing some of the pics of those moments, in this post. I’m also asking for your prayers, encouragement and support of Jeremy and Angela, as they battle through this incredibly difficult time. Jeremy is back in ICU today, with further traumas, and he needs your prayers that God will sustain him, encourage him, heal him, and restore him. He is very weak, but I believe he has been sustained to date by the prayers of those around him, whose intercessions have protected him so far from numerous complications of true seriousness and magnitude. As his journey is not yet finished, please continue to lift him up in prayer before our Lord, Jesus Christ, the Giver of Life.

~~ Randall Mains

 
 

Serious and Dangerous Situation – Prayers Please

We need your prayers in what feels like our most desperate hour yet. Jeremy is back in the ICU. Overnight he had difficulty breathing so they moved him to the ICU and he is now on a ventilator. He also spiked a very high fever – 103.8. Doctors don’t know exactly what is wrong and that is scary. This a serious and dangerous situation. Thank you for your prayers.

~~ Angela

We need help

Quickly. We are getting read to go be with Jeremy through the morning shift. Here’s what I woke up thinking:

For forty years I have kept a prayer journal in which I’ve recorded my requests, the answers to my prayers, and the way I’ve seen God intervene in my everyday life. I’ve learned that I identify answered prayers more readily when I pray specifically.

The Internet affords us the opportunity to experiment on a whole scale level with the impact of prayer. So here are some specifics regarding Jer’s condition. Pray specifically that:
The chemo inflammation in his brain will be healed.
The “spot” on his brain near his auditory canal will be gone.
He will begin to strengthen.
We can get him up to continue the interrupted physical and swallowing therapy.
He will continue to get deep sleep.
That God’s will and purposes will be done and we will rejoice in it.

Sometimes people want to help us, but don’t know what to do. We need help.

I would like to bring Christ’s love to this floor. A plate now and then of freshly baked cookies (bars or whatever) left in the kitchen for the staff with a thank you note would be great!

Tony Payne from Wheaton College Music Conservatory offered to come play the very silent grand piano in the waiting room. Other ideas? Maybe a noon-time concert every now and then. Small gatherings of prayer in the waiting room for everyone on the floor?

Also, when a family is under stress, our great Enemy attempts to brew trouble. Pray against the spiritual harassment. For instance, we have been dependent upon donor dollars for our whole marriage–a lifetime of dependency upon the good will of others. We’ve gone for days without any donations in PO Box 30, Wheaton, IL 60187. When this happens, I just begin to fast. This is an area where we are vulnerable, and those are the places where evil loves to hit us. Fatigue also makes us weary and stress cracks us along our character faults. Pray that we will be cautious in what we say and do constant attitude checks so we do not spread any more pain and distress to those around us.

I pray for the Mercy to surround all I love,
I plead the blood of Christ for all I know who are struggling and are feeble in various ways.
Through the power of the Holy Spirit, I refuse the attacks of the dark one.
I lean into the love of our Heavenly Father and proclaim that He is God of All and together we will defeat the purposes through our prayers and praises.

Amen.

~~ Karen Mains

Love is Even Stronger Than Death

So many of our friends are concerned. How are you guys doing? is the question we hear most frequently. Then, how is Jeremy?
Probably, the answer to that is pretty much summarized in the hand-printing given to me by one of Jeremy and Angela’s neighbors on his business card. Loren Iverson visited Jeremy when he was sound asleep and asked me to pass this on to Jeremy. Which I will do, when he is awake and I remember!
Angela’s post last night gave the most recent update. Go to their Facebook Page for an articulate explanation: Jeremy Angela Mains. Briefly, doctors think they have discovered what looks to be a spot of lymphoma near the auditory nerve in Jeremy’s brain. This is grave, of course; and they hope to start a 15-day round of radiation on Monday—at least that’s the last word. Sometimes I feel that the Lord is creating an environment in which He can display his works and using my son as the object lesson. Stay tuned.
As to how we olders are doing. Loren’s card says: “It’s not the size of the dog in the fight . . . It’s the size of the fight in the dog!!” Certainly, Jeremy has fight in him, and we have been known to be pretty dogged scrappers ourselves.
Last Tuesday, sitting for almost two hours in the dentist chair, I finally had time to consider what I would miss about Jeremy if he would die. When this Cancer Journey first started, I couldn’t bear to think that one day I might not hear his voice on the phone, “Hi Mom! It’s Jer.” Then I thought of my parents; I clearly remember their voices, the things they said, and they have been gone for decades. I wouldn’t lose this gift. One way or another, I’ll be hearing Jeremy saying, “Hi Mom! It’s Jer,” all the days of my life.
I began to discover in this dentist-chair-meditation (“Bite down a little harder,” says the dentist) that I would recount air bands on long car rides, of two little boys calming their spirits—one on one church pew and the other on another. Jeremy, the great conversationalist, who has been tutoring me on the last 50 years of popular music during the early days of his cancer, always rising to intellectual exchange. His passion for those no one else has passion for: the immigrant community grateful for his help. My surprise at how great a Dad he has been. His pride in his wife, Angela. There will be 41 years of memories. Our Mom/son trip to Guadalajara (last kid/travel privileges.) Jeremy leading David and me through Italy with his just-acquired tourist Italian.
Suddenly, I looked up from the dentist chair at the empty television screen (which I thanked the dental assistant for turning off) and I could see Jer striding toward me, handsome, smiling (with hair!), while a soft light grew behind him. Imagination? A moment of pre-cognition? Spiritual vision? A notion of Heaven? I do not know, but he was also swinging a baby in the ubiquitous infant carrier, which has been constant equipment over the last years. Do they have those in heaven?
There is a phrase that keeps coming to me, “Love is even stronger than death.” I have repeated it as a mantra to ease my heart. “Love is even stronger than death.”
This morning I had a moment to look up the full quote in my prayer journal. “For to him that loveth, nothing is difficult, nothing is impossible; because love is stronger than death. Oh, may love fill and rule my heart. For then there will spring up and be cherished a likeness of character, and union of will, so that I may choose and refuse what Thou dost.”
Give me that kind of love Oh, Lord. Let it be the grace I carry forward from all this.
A friend and I made plum upside-down-cake for the 11th floor hematology staff. I left it in the kitchen with a note of thanks. The sitters, women hired to stay with a patient who can’t fend for himself, and I often pray together. Sometimes Jeremy’s room is like being in a Black church. He would like that. I wish I could find a friend who could play jazz, classical music and hymns (someone who lives nearby). There is a grand piano in the visitors’ lounge, and when it is played, all the patients in their rooms and the staff who tend to them can hear the sound.
Love is even stronger than death.
~~Karen Mains

I was warned

I was warned. Four months ago, when my youngest brother, Jeremy (41), was first diagnosed with lymphoma, a compassionate friend who works in pharmaceuticals tried to prepare us for what might lie ahead. “Sometime during this battle with cancer, Jeremy will most likely get closer to death than you could ever imagine possible.” i’ve thought about that warning countless times, especially during these past two weeks as Jeremy has become alarmingly weaker. My brother is extremely frail. Lymphoma has raged havoc on his body. He is fighting desperately for his life.

I’m here in the hospital having taken the night shift last night. Jeremy is sleeping now, breathing heavily as he constantly wakes himself up in an ongoing cycle of coughing up phlegm. I don’t like Jeremy ever being here alone. I want those who love him deeply to be in his room caring for him. I’m concerned he’ll need something that the nurses won’t be able to decipher through his barely audible mumblings–a cool cloth for his forehead, a foot massage, a comforting report that his 3 small children are all okay, a swab for his mouth, a bedpan, prayer over him, scripture read.

As I sit besides his bed, I tearfully find myself asking how could it even be possible for Jeremy to get any closer to death than this? Last night, we were informed of the dire news that the lymphoma has moved to both Jeremy’s spinal fluid and to his brain. Devastating news, Heartbreaking. An urgent radiation treatment is scheduled to take place ASAP.

Each day as I’m with Jeremy I’m noticing that it’s becoming more difficult for me to leave him. My planned 3 hour visits continually stretched to 7 or 9 hours. It’s getting hard to walk away and go back home. I can feel myself somehow clinging to irrational idea that if I’m here with him then somehow, somehow I can hold onto him, make sure he stays here with us and doesn’t leave.

Last night someone encouraged me to not give up hope, to keep fighting, to keep trusting, believing, and praying. I wholeheartedly agree and am present to being in all of those places. I know that God is, beyond a doubt, completely able. I was also compassionately cautioned that it might be wise to prepare myself to “let Jeremy go”. There is certainly wisdom in these words and I wish I could say I’m mature enough, wise enough, experienced enough, brave enough, what-ever-enough to be able to do that, but quite honestly, I am not. I’m not ready. Not even close. How exactly does one “prepare”? Odd-I know God is here, I feel His abundant presence in the midst of these heartbreaking circumstances. I feel such peace knowing that God is completely in control, and yet every ounce of my being resists the thought of letting my baby brother go. I want him to get better, to be here with us, to be able to watch his 3 kids grow. I want Jeremy and his beautiful wife, Angela, to have many happy years together. I want Jeremy’s laughter in my life, his contagious enthusiasm for learning, his compassion and care for the world, his inspiring faith. I want him to be with us at family gatherings–birthday celebrations and holidays. I want him to live. To live. And, most certainly, I know without a doubt I just don’t ever want to let him go.

~~ Melissa Mains-Timberlake

Love is even stronger than death.

So many of our friends are concerned. How are you guys doing? is the question we hear most frequently. Then, how is Jeremy?

Probably, the answer to that is pretty much summarized in the hand-printing given to me by one of Jeremy and Angela’s neighbors on his business card. Loren Iverson visited Jeremy when he was sound asleep and asked me to pass this on to Jeremy. Which I will do, when he is awake and I remember!

Angela’s post last night gave the most recent update. Go to their Facebook Page for an articulate explanation: Jeremy Angela Mains. Briefly, doctors think they have discovered what looks to be a spot of lymphoma near the auditory nerve in Jeremy’s brain. This is grave, of course; and they hope to start a 15-day round of radiation on Monday—at least that’s the last word. Sometimes I feel that the Lord is creating an environment in which He can display his works and using my son as the object lesson. Stay tuned.

As to how we olders are doing. Loren’s card says: “It’s not the size of the dog in the fight . . . It’s the size of the fight in the dog!!” Certainly, Jeremy has fight in him, and we have been known to be pretty dogged scrappers ourselves.

Last Tuesday, sitting for almost two hours in the dentist chair, I finally had time to consider what I would miss about Jeremy if he would die. When this Cancer Journey first started, I couldn’t bear to think that one day I might not hear his voice on the phone, “Hi Mom! It’s Jer.” Then I thought of my parents; I clearly remember their voices, the things they said, and they have been gone for decades. I wouldn’t lose this gift. One way or another, I’ll be hearing Jeremy saying, “Hi Mom! It’s Jer,” all the days of my life.

I began to discover in this dentist-chair-meditation (“Bite down a little harder,” says the dentist) that I would recount air bands on long car rides, of two little boys calming their spirits—one on one church pew and the other on another. Jeremy, the great conversationalist, who has been tutoring me on the last 50 years of popular music during the early days of his cancer, always rising to intellectual exchange. His passion for those no one else has passion for: the immigrant community grateful for his help. My surprise at how great a Dad he has been. His pride in his wife, Angela. There will be 41 years of memories. Our Mom/son trip to Guadalajara (last kid/travel privileges.) Jeremy leading David and me through Italy with his just-acquired tourist Italian.

Suddenly, I looked up from the dentist chair at the empty television screen (which I thanked the dental assistant for turning off) and I could see Jer striding toward me, handsome, smiling (with hair!), while a soft light grew behind him. Imagination? A moment of pre-cognition? Spiritual vision? A notion of Heaven? I do not know, but he was also swinging a baby in the ubiquitous infant carrier, which has been constant equipment over the last years. Do they have those in heaven?

There is a phrase that keeps coming to me, “Love is even stronger than death.” I have repeated it as a mantra to ease my heart. “Love is even stronger than death.”

This morning I had a moment to look up the full quote in my prayer journal. “For to him that loveth, nothing is difficult, nothing is impossible; because love is stronger than death. Oh, may love fill and rule my heart. For then there will spring up and be cherished a likeness of character, and union of will, so that I may choose and refuse what Thou dost.”

Give me that kind of love Oh, Lord. Let it be the grace I carry forward from all this.

A friend and I made plum upside-down-cake for the 11th floor hematology staff. I left it in the kitchen with a note of thanks. The sitters, women hired to stay with a patient who can’t fend for himself, and I often pray together. Sometimes Jeremy’s room is like being in a Black church. He would like that. I wish I could find a friend who could play jazz, classical music and hymns (someone who lives nearby). There is a grand piano in the visitors’ lounge, and when it is played, all the patients in their rooms and the staff who tend to them can hear the sound.

Love is even stronger than death.

~~ Karen Mains

These have been hard days

The yo-yo has been in full swing from “no cancer in Jeremy’s brain”, “maybe cancer”, “MRI cancelled, this is chemo-related”, “There is most definitely cancer there.” It has been rough and the fatigue of the past four months is really setting in. Just when we got to the point of discussing very scary possibilities, I left Jeremy at the hospital, drove home in tears, praying all the way. Then the doctor called.

Jeremy most definitely has lymphoma cells in his brain. He is also reacting to the chemotherapy. The chemo reaction is essentially inflammation of the brain. This reaction is a form of chemo toxicity, something that could get worse and could be deadly. On top of that, there are cancerous cells present in Jeremy’s spinal fluid indicating the cancer in the brain has not responded to the chemotherapy as previously thought. With Blastic Mantle Cell Lymphoma it is quite possible for the cancer to go away but then quickly come back. This has been a concern for quite some time. The good news, although I don’t have this set in stone, is that the lymphoma in the other parts of Jeremy’s body has responded very well to the chemotherapy. The chemo just doesn’t seem to be working on the cancer in the brain or CNS (central nervous system). This is what is causing Jeremy’s weakness, facial paralysis and other problems of late.

Earlier today a doctor told us this may be a possibility and suggested radiation as an option but not to worry, that wasn’t something very urgent. Just an hour or so later, the doctor called to say that it was, in fact, quite urgent to start radiation as soon as possible. They have already begun preparing Jeremy for this with a plan to do full brain radiation for 14 straight days beginning as early as this Monday. I probably don’t need to say that there are significant risks involved with full brain radiation. The doctor told me that there was a 20 – 30% chance that Jeremy’s mental status would deteriorate even more and that was a very real risk. The primary impact would be cognitive with the possibility of permanent memory issues. But, as the doctor so candidly told me “If we don’t do this, the lymphoma will. There really isn’t an option here. Obviously, radiation would never be the first option but we feel so strongly that this is the only option we have.”

So there it is. At least this is the end of the current yo-yo trip we’ve been riding. In that respect it is a relief. Radiation, they’ve assured me, is very effective at beating back lymphoma. Assuming all goes well, we could see improvement in Jeremy in as little as five days. Meaning Jeremy could be on the path to wellness, getting stronger as he needs to be doing. And, assuming the radiation works as well as it usually does, Jeremy could still be on track for the bone marrow transplant, again assuming the cancer is gone in the rest of the body. While things may feel bleak, there is still much to be hopeful for in the days and weeks to come. The battle isn’t over.

So, just as the fatigue was settling in, we see the start of a new, more dangerous battle straight ahead. We have the weekend to recuperate and recover, but Monday this new battle begins. And I’m all in. We are still fighting this fight. The race is not yet over. I’m not giving up – I’m using this weekend to get my second wind.

When I asked Jeremy earlier today how he was doing, he said “We just need to pray the Lord gets me through this.” So that’s what we’re doing. And we need you to join us. Get on your battle gear, enter in, fight this fight and run this race with us. We need a team of warriors cheering Jeremy and his support team on. We need people praying for him constantly (as so many of you are) and we need prayers for those of us holding Jeremy’s hand through these treatments. Now is not the time to give up, now is the time to press on.

We need to pray that Jeremy’s reaction to the chemo resolves and that it doesn’t continue to harm him. We need to pray that Jeremy tolerates the radiation very well, the lymphoma responds appropriately and Jeremy doesn’t have terrible long-term or permanent side effects. We need to pray for renewed strength to press on. Jeremy’s body has been through too much already.

The road ahead is terrifying but it won’t be completely dark. There may be tears, but there will be miracles. Our Hope will not disappoint. I look forward to seeing you all on our battlefield with us in whatever role you play. Thank you for your continued prayers and love.

~~ Angela

When God is the Silence, we are in the PRESENCE

This has been the week when potential death has been leering at our family due to Jeremy’s deteriorating condition from the complications of treating lymphoma. Your prayers and love have been extraordinary, and we feel buoyed by them despite the circumstances.

On Tuesday (September 24) I sat for an hour and a half in the dentist chair while Dr. Forney chiseled a post out of the broken half of a molar still left in my mouth. Novocain was administered, impressions taken, and a temporary crown applied. While waiting for my gum to get numb, I began to conduct an inner dialogue. I’m not hearing anything from you, Lord. Today I need a tender word, a promise—something.

Nothing.

The dentist cheerily talked about the nice weather. “Yessir. We certainly are in the fall season. Which season do you like best?” I had no sucking apparatus in my mouth yet so I could respond with more than the jumble-mumble that occurs with numbed lips and dental apparatus. “I love fall, but spring is my favorite time of year.” I deliberately do not elaborate. He goes on about Halloween trick-or-treating with his kids and previous years when the day was pleasant or when it rained. “Yep, slanting rain. That year it just came at us sidewise.”

But I’m not really listening; I’m waiting for a communication of an entirely different kind. Fortunately, dental work begins in earnest. I can concentrate on listening. Suction tubes are inserted, chipping begins, a dialogue goes on over my head with the dental assistant. I try not to hear the office Musak in the background.

Then I remember a lesson learned earlier during another hard passage in my life. (“Open your mouth”, the assistant encourages. She explains what is happening. I’m on automatic pilot as far as the dental process is concerned.) Years ago, I learned that when God is silent, He is entrusting us with the capability of knowing Him in a totally other way. It’s not so much a matter of God being in the silence as God being the Silence. “I AM,” spoke YAHWEH from the burning bush. “I AM . . .” said Jesus over and over. When God is the Silence, we are in the PRESENCE.

Then, almost indiscernibly, a wispy thought of the story of Lazarus rose. I AM the God who brought Lazarus from the tomb. Then, very faint, the phrase over and over, “. . . for the glory of God. For the glory of God.” It wasn’t until this morning (Friday of the same week) that I had time to look up the reference to the Lazarus story in John 11. Christ’s words actually are, “This illness is not unto death: it is for the glory of God, so that the Son of God may be glorified by it.”

An hour and a half after walking into the examining room, the work is done, I’m shown by looking in a mirror held before me the color of my temporary crown—how it matches the rest of my teeth, “Oh, that looks great,” I say, although it could have been chartreuse for all I cared.

I have been resting in this fragment, this phrase, this meaning for several days; I am trying to let it tell me what it is saying. One thing I realize is this: that this is not the Mains family story, Jeremy’s long journey into cancer. For some reason I don’t completely understand, it is God’s story. We are all but players in a scenario He is working out that is bringing us stress and distress. I admit right now it is a cliff-hanger.

However the last chapter ends, please pray that I will inhabit my part so that God, the Author, will be glorified by it.

I’m still listening. Leaning into the Silence. An e-mail comes from our friend, Tirus Githaka, in Kenya. It is a phrase from Psalm 27:13 that comes to mind when he and his wife, Winnie, pray for Jeremy, “For I know I will see the goodness of the Lord in the land of the living.”

~~ David Mains

Your prayers and love have been extraordinary

This has been the week when potential death has been leering at our family due to Jeremy’s deteriorating condition from the complications of treating lymphoma. Your prayers and love have been extraordinary, and we feel buoyed by them despite the circumstances.

On Tuesday (September 24) I sat for an hour and a half in the dentist chair while Dr. Forney chiseled a post out of the broken half of a molar still left in my mouth. Novocain was administered, impressions taken, and a temporary crown applied. While waiting for my gum to get numb, I began to conduct an inner dialogue. I’m not hearing anything from you, Lord. Today I need a tender word, a promise—something.
Nothing.

The dentist cheerily talked about the nice weather. “Yessir. We certainly are in the fall season. Which season do you like best?” I had no sucking apparatus in my mouth yet so I could respond with more than the jumble-mumble that occurs with numbed lips and dental apparatus. “I love fall, but spring is my favorite time of year.” I deliberately do not elaborate. He goes on about Halloween trick-or-treating with his kids and previous years when the day was pleasant or when it rained. “Yep, slanting rain. That year it just came at us sidewise.”

But I’m not really listening; I’m waiting for a communication of an entirely different kind. Fortunately, dental work begins in earnest. I can concentrate on listening. Suction tubes are inserted, chipping begins, a dialogue goes on over my head with the dental assistant. I try not to hear the office Musak in the background.

Then I remember a lesson learned earlier during another hard passage in my life. (“Open your mouth”, the assistant encourages. She explains what is happening. I’m on automatic pilot as far as the dental process is concerned.) Years ago, I learned that when God is silent, He is entrusting us with the capability of knowing Him in a totally other way. It’s not so much a matter of God being in the silence as God being the Silence. “I AM,” spoke YAHWEH from the burning bush. “I AM . . .” said Jesus over and over. When God is the Silence, we are in the PRESENCE.

Then, almost indiscernibly, a wispy thought of the story of Lazarus rose. I AM the God who brought Lazarus from the tomb. Then, very faint, the phrase over and over, “. . . for the glory of God. For the glory of God.” It wasn’t until this morning (Friday of the same week) that I had time to look up the reference to the Lazarus story in John 11. Christ’s words actually are, “This illness is not unto death: it is for the glory of God, so that the Son of God may be glorified by it.”

An hour and a half after walking into the examining room, the work is done, I’m shown by looking in a mirror held before me the color of my temporary crown—how it matches the rest of my teeth, “Oh, that looks great,” I say, although it could have been chartreuse for all I cared.

I have been resting in this fragment, this phrase, this meaning for several days; I am trying to let it tell me what it is saying. One thing I realize is this: that this is not the Mains family story, Jeremy’s long journey into cancer. For some reason I don’t completely understand, it is God’s story. We are all but players in a scenario He is working out that is bringing us stress and distress. I admit right now it is a cliff-hanger.

However the last chapter ends, please pray that I will inhabit my part so that God, the Author, will be glorified by it.

I’m still listening. Leaning into the Silence. An e-mail comes from our friend, Tirus Githaka, in Kenya. It is a phrase from Psalm 27:13 that comes to mind when he and his wife, Winnie, pray for Jeremy, “For I know I will see the goodness of the Lord in the land of the living.”

~~ David Mains

Smile – Here is the rainbow we’ve been praying for

I spoke with my father in-law David AndKaren Mains who is with Jeremy this morning and was able to talk to a few of the residents at the hospital this morning. Unfortunately I wasn’t able to talk with the attending physician (but I hope he returns my call soon), so the specific details are not as clear as I would like to present but overall the news is positive. At this point, the doctors believe whatever they are concerned about related to Jeremy is due to a reaction to the chemotherapy (which he has had before) and so they are holding off on an MRI and not doing the biopsy that was scheduled for tomorrow. At this point we just need him to get stronger and healthier and improve – which he has been doing slowing over the past few days.

We don’t know what this means for the future and we still need Jeremy to improve in order to continue with his treatment plan. At this point he is behind schedule for round four chemotherapy and we don’t know what that means. There will likely be more news as we learn more about our next steps in the days to come.

Jeremy continues to need your prayers. He is completely lucid, telling jokes and sharing his thoughts. He is also quite weak, particularly in his legs. Thankfully, because his family has been with him, advocating so boldly for him, he’s been up and walking the floors for the past few days, getting a bit stronger each time. It seems he needs constant support and someone advocating for him in order for him to make the improvements the doctors need to be seeing.

Jeremy continues to battle the remnants of a cold. It is still rather difficult to hear and understand some of the things that he is trying to say due to a stuffy throat/vocal cords. Please pray that this cold goes away quickly so Jeremy can resume drinking (swallowing) and communicating more clearly so the medical team can more clearly understand him and that his presentation is a more accurate reflection of his health.

Lastly, please pray for the doctors, nurses and staff on the hematology/oncology floors at Rush. We understand it has been a rough few days there and they could all use prayers.

Thank you for praying with us and for us and witnessing this rainbow of hope with me. We appreciate your continued prayers. It is wonderful and comforting to have you all along on this journey.

~~ Angela

There are graces in everyday and in every hour

Arrived at the hospital at 7:45 a.m. having taken an express train into the city and a cab to Rush. Doug Timberlake and I (mostly Doug with his sports background) worked with Jeremy on some knee lifts fs he sat in a chair (at least for an hour) and encouraged him to do curls with a Gatorade bottle. It is work to catch what Jeremy is saying–for the listener as well as for him. Now the facial paralysis is complicated by a gurgle from the constant draining in the back of his throat. Jeremy is pretty determined to move however though extremely feeble, so he went at the Gatorade curls and knee lifts with some vigor (given how weak and feeble he is). Doug, my son-in-law, has this wonderful way of using humor to exhort and encourage (certainly a spiritual gift) and said something to the effect of “Wow! Are you trying to outdo Arnold Schwarzeneger?” at which time Jeremy lifted the Gatorade bottle ABOVE his head–no mean feat in his condition. We are constantly surprised with his humor (when we can understand him). I need to start writing this stuff down (for those in the Mains family, it is a little like Grandpa Mains’!) Today he asked several times, “How are you doing Mom?” which sounds a little like Ohouoinon, then “Are you getting enough sleep?” which sounds a little like Ohouoieep. Such considerate kindness from him under the circumstances.

I saw the Chicago Bulls basketball player, Joaquin (sp?) Noah, in the hallway on the fourth floor today. Must remember to tell Jer about that tomorrow!

There are graces in everyday and in every hour. We just must keep our eyes open to see them.

~~ David Mains

We Were Called to Walk this Road

Yesterday was a one of the more difficult days during this season. Today wasn’t significantly better.

Yesterday the doctors came into Jeremy’s room, heads down, clearly concerned, telling me they believed based on everything they were seeing in Jeremy that the disease was progressing in his brain. It was a shock and I wasn’t prepared for it, especially after last week when the same doctor visited him in the ICU and reported that in spite of his infections and fevers, the cancer was going away. The chemo was working. So how was it that now, just a short time later, the doctor could say such things and based on what information?

Today I had to give permission for them to remove a portion of my husband’s brain in the hopes it either confirms or officially denies the presence of cancer.
Regardless of the things that have played out over this past week and any thoughts or feelings I have about the care Jeremy is receiving, the way the doctors address their concerns (process of elimination) or this latest development, it is very hard. This whole thing is excruciatingly hard.

It is incredibly hard to wake up in the morning and get three kids dressed and ready for school or childcare all by myself. It is hard knowing they will be in school then childcare most of the day – so different than what Jeremy and I had wanted before all of this came to be. It is incredibly hard picking them up at 5:30 when they are very tired and I’m equally tired. Most nights we all have total melt downs. Half the time I don’t have any energy to make them a wholesome meal. One night we had bagels with cream cheese. Another night we had whatever prepared snack items we had in the house: cheese sticks, gummy not-real food wannabe fruit treats, apple sauce. It is hard to summon up the energy to read to them or spend any quality time together. It is hard when we do spend quality time together, reading books and talking about our day only have the conversation come back to Jeremy. It is incredibly hard to have my five year old, with her big beautiful eyes, look at me and say “Mama, is my papa dying?” And as I try to keep my composure to answer her, telling her how sick he is and how important it is to keep praying for him, she looks at me and says “Don’t cry, Mama. I’ll pray right now. Please stop crying. I’m praying.” How hard and difficult is that.

It is hard to put the children to bed and know that I am alone, my husband isn’t home with me. It is worse to come home alone knowing I am leaving him behind in the ICU or an uncomfortable hospital room knowing he just wants to sleep in his own bed. And it is hard leaving my children with more childcare, less time with me, so that I can be in the hospital with him. This is all so very hard.
One of the hardest but less obvious parts is knowing that the kids and I are doing OK and we are moving on with life. They are learning new things, growing up, and have adjusted to not having Jeremy around. Our sweet baby has lived 30% of her life since Jeremy’s diagnosis and extended hospital stays. The culture in our home is slowly changing as a result of Jeremy’s extended absence. It is a silent wound that I don’t know is there until I look for it and then I feel its sharp sting.

Yet, in spite of this horrible road we are walking, I know there are so many out there walking a more difficult path than ours. There are so many out there without hope and love and support. I have the privilege of working in a faith-based agency that assists people in crisis. I know, I see it all the time, that there are people suffering from so much more than this. Our agency worked with a single woman with four children diagnosed with terminal cancer that had no local friends or family to support her, care for her, even drive her to her chemo appointments. How horrible is that? I recently read about another couple in which the wife was diagnosed with lymphoma while pregnant, delivered the baby, and the baby eventually developed a different form of cancer. Mother and baby both dealing with chemo at the same time. Mom was cured and the baby wasn’t. How horrible is that? I read about a man, younger than Jeremy, diagnosed with Mantle Cell Lymphoma a year after he was married while his wife was six months pregnant. He was in the hospital dealing with similar side effects as Jeremy is when his first child was born. How hard is that for both parents? And yet there are more difficult stories.

Before Jeremy was diagnosed one of his part-time jobs was to assist immigrants. I can’t tell you how many sad stories he heard about people wanting to be with their sick loved ones either by coming to the US legally or by getting a visa to travel to another country. I can’t even imagine going through something like this not being able to be with Jeremy, right by his side, every step of the way. That would be unbearable.

This pain we are experiencing now reminds me the pain of so many others, knowing others have it so much worse than even this. I’m ashamed at my lack of sensitivity and compassion in the past. I never knew how much these things hurt.

And yet our very difficult path is littered with miracles and beauty and joy. We are surrounded by love and have experienced a very rich community of support. A community of support that puts me to shame – people praying for us from all over the world, caring for us financially, providing meals, watching our children, making sacrifices. We are surrounded by love and it is amazing and wonderful. I am learning so much about mercy, grace and compassion because of it.

Our road is full of miracles both small and large. Every time I have been discouraged and things have been especially hard, I’ve been encouraged with either something small or large. Once I saw a rainbow on my way home from a difficult day at the hospital. Another time, I fervently prayed God would break Jeremy’s fever, one he had been dealing with for several days, before I arrived at the hospital. When I got to his room, his nurse took his temp and the fever was gone – it never returned during that hospital stay.

During my previous “lowest point” of this season, I spent a lot of time in prayer – how could I not? It was a handful of hard days. In the midst of it all, I felt quite literally that God was saying to me, “You silly girl. How many times have you cried out to me to spare you, to have mercy on Jeremy, you and your children? How many times have you called on Me to get you through this? Don’t you know everything will be OK? Don’t you remember the rainbow, the broken fever? Everything is going to be OK.” Yet here I am, crying out to God yet again to have mercy on Jeremy and on our precious children.

I know things are going to be OK, whatever the outcome. We will be OK. The children will be OK. For whatever reason we were called to walk this road, it is our road to walk and we must keep moving forward and it will be OK. This pain we are feeling is because of the love and joy we have experienced and been blessed with so far and in that respect it is beautiful. Things will work out according to a Divine plan beyond our understanding and it will be good. I don’t doubt any of that. Right now I’m keeping my eyes open for the next rainbow to get me through these days ahead.

~~ Angela

They plan to do the biopsy on Friday

Today while I was at work I got a call from the neurosurgeon asking if I give my permission for them to perform a biopsy on Jeremy’s brain. I had to listen to the purpose and the risks involved. Essentially they want to remove a small tissue sample to see if there are cancer cells present in the tissue. The procedure would produce three possible results: 1) Cancer present in the tissue, 2) No cancer present in the tissue and belief that no cancer is present, or 3) No cancer present in that particular sample and the possibility that cancer is actually present in the brain just not that particular sample. If this is the case, there would be no way for the doctors to prove it without doing additional biopsies and they would be basing their concern on hunches or clinical presentations of what they think they see in Jeremy presently. None of the possible results, save no cancer present and doctor’s believing that, is good. As a result, I don’t even know if the procedure, this horrible invasive procedure, is worth it. What a horrible thing to approve.

They plan to do the biopsy on Friday.

Please continue praying for us. These have been the hardest days so far.

~~ Angela

There are graces in everyday and in every hour

Arrived at the hospital at 7:45 a.m. having taken an express train into the city and a cab to Rush. Doug Timberlake and I (mostly Doug with his sports background) worked with Jeremy on some knee lifts fs he sat in a chair (at least for an hour) and encouraged him to do curls with a Gatorade bottle. It is work to catch what Jeremy is saying–for the listener as well as for him. Now the facial paralysis is complicated by a gurgle from the constant draining in the back of his throat. Jeremy is pretty determined to move however though extremely feeble, so he went at the Gatorade curls and knee lifts with some vigor (given how weak and feeble he is). Doug, my son-in-law, has this wonderful way of using humor to exhort and encourage (certainly a spiritual gift) and said something to the effect of “Wow! Are you trying to outdo Arnold Schwarzeneger?” at which time Jeremy lifted the Gatorade bottle ABOVE his head–no mean feat in his condition. We are constantly surprised with his humor (when we can understand him). I need to start writing this stuff down (for those in the Mains family, it is a little like Grandpa Mains’!) Today he asked several times, “How are you doing Mom?” which sounds a little like Ohouoinon, then “Are you getting enough sleep?” which sounds a little like Ohouoieep. Such considerate kindness from him under the circumstances.

I saw the Chicago Bulls basketball player, Joaquin (sp?) Noah, in the hallway on the fourth floor today. Must remember to tell Jer about that tomorrow!

There are graces in everyday and in every hour. We just must keep our eyes open to see them.

~~ David Mains

Abide

Feeling heartbroken as I spent all day and much of the evening taking care of my youngest brother Jeremy who is fighting cancer at Rush Memorial Hospital in Chicago. These past few months, I’m learning to understand the profound beauty of the word “abide”. Jeremy is in a very precarious situation. He’s the weakest I’ve seen him since this cancer battle began. His face is paralyzed which makes it difficult for him to communicate–let alone for others to understand what he’s saying. He has dropped weight drastically in the 3.5 months since he’s been diagnosed–from 220 to 150 pounds. Yet, in the midst of my helplessness, I’m truly learning to abide–to be present to Jeremy as much as I’m able–to rub his bruised and boney feet and his hands, to shift his pillows and blankets to make him most comfortable, to cheer him on when he struggles to take just a few steps on his wobbly legs in order to help his body gain strength, to suction the phlegm from his mouth that he is continually coughing up, to pray for him as he drifts in and out of sleep, to calm his confusion, to swab his pasty mouth as he cannot drink or eat (he is hooked up to a feeding tube 24/7). Yes, I’m learning to abide. To be with Jeremy–in each of these moments–as fully present as I’m able. To accept where he is in this battle yet not give up hope for healing. To stand by my brother, to uphold him, to observe and meet his needs with respect, compassion, and care. To abide. To abide–even in the midst of feeling heartache.

~~ Melissa Mains-Timberlake

Some Hard News

Met with the doctor this morning and received some hard news. The MRI they did yesterday shows changes in Jeremy’s brain and the doctor doesn’t know if this is disease progression or a reaction to the chemotherapy or something else. They believe he isn’t getting stronger like he should be and they are quite concerned.

Tomorrow they will test his spinal fluid to see if they can find cancerous cells (the fluid was clean less than a week ago) but this test isn’t able to identify cells in his brain tissue. So the doctors aren’t sure what this all means. Other than the possibility that the disease is progressing in his brain, this could be another kind of infection or a reaction to the chemotherapy. They won’t really know for sure unless something shows up in his spinal fluid tomorrow or an MRI next week provides a more clear picture. Even then they still may not know.

When I questioned the likelihood that this was disease progression given that all the other tests showed the lymphoma was responding well to the chemotherapy, they said sometimes this, reduction in some areas, progression in others, can happen. Again they aren’t certain this is the case but that is the basis of their concern.

So we need your continued prayers. In my opinion Jeremy is very week but he is lucid and the nurses can agree to that. He hasn’t slept well at all for four or five days so I think his presentation looks worse than he is after he gets a good rest. The doctor today said she had never seen him “like this” which is a bit alarming for her and causing concern.

Please pray Jeremy gets renewed strength and demonstrates significant progress over the next few days. Pray the spinal fluid is clean and the follow up MRI provides less alarming answers. We have been in scary places like this before and they have worked out. God has been kind. I think the unknown and testing to eliminate scary possibilities is the hardest part.

Thank you for your prayers. We need them today and in the days to come.

~~ Angela

Jeremy is doing better

Jeremy is doing better and should be getting off the antibiotics soon.

Hopefully he’ll be released from the hospital once he gets a bit stronger. If you are interested in staying with him a bit in the hospital or after he comes home, let me know.
Thanks!

~~ Angela

Spent an uncomfortable night with Jeremy

Spent an uncomfortable night with Jeremy. His bed was to small/short so he couldn’t get comfortable and barely slept. My chair was lousy and I was up each time Jeremy was.

But, the sun came up and we have good news. Jeremy’s cold is on the mend and he is getting stronger. The antibiotics are making him weak but he should get stronger once he’s off the meds.

The even better news – the results from the bone marrow biopsy on Tuesday revealed no cancerous cells. This is great news and yet another confirmation that, in spite of colds and infections, Jeremy is getting better and the cancer is responding very well to the chemotherapy. This is so very encouraging. Thank you for your prayers – God is listening.

I don’t know how long Jeremy will need to stay in the hospital. He is out of the ICU but still needs antibiotics. We know the doctors want Jeremy to make a good recovery and get stronger before doing another round of chemo and Jeremy is grateful for the “break”.

Please continue praying for him. We are now off schedule in terms of his chemo but we are glad the cancer is responding. Pray this break doesn’t cause any additional set backs or allow the cancer time to grow again. Thank you!

~~ Angela

Help on the Weekend

I am making plans for this weekend and was wondering if anyone was free and interested in staying overnight with my kids Friday evening to Saturday morning so that I can be with Jeremy at the hospital? If that were to work out, I would also need someone (maybe the same wonderful person or another wonderful person) to take Nehem to his soccer class at the Warrenville Park District that runs from 9 to 9:50 Saturday AM. I would plan to be home mid-day on Saturday. Call, text or message me if you are free and interested in this Thanks!

~~ Angela

I Love the ICU Care

I spoke with Jeremy’s nurse awhile ago and she believes he is making improvements. His vitals are more stable and while he did have a fever overnight, it was mild. She also believes he is a bit stronger today than yesterday. As a result, they are making plans to transfer Jeremy out of the ICU and back to the “floor”. I must admit, I’m a bit sad to leave the ICU as I love the extra care Jeremy receives when he is there but it is reassuring to know he no longer needs to be there.

Please keep praying for Jeremy. He’s white blood count rose a bit yesterday but then dropped again today. They are pretty sure it is connected to the antibiotics he is on but they feel the antibiotics are doing more good than harm so it is better to keep him on them. Having a low white blood count means Jeremy is weaker and more susceptible to infections. Thanks for your prayers!

~~ Angela