Monthly Archives: October 2013

A new phase of calm

I am back at work today and hope to be, although not certain, entering a new phase of calm in regard to Jeremy’s health status. He had the trach put in late Friday night but has been in a lot of pain and has been heavily sedated. Overall he appears to be doing well, his blood counts are better and he hasn’t had any new complications recently. The hope is for him to get his trach fitted with a cap soon so that he’ll be able to talk. We believe that once he is able to talk, we can get a better sense of how he is doing mentally and begin working with him physically. As soon as he can start swallowing on his own, the trach can be removed.

I met with his main doctor yesterday and he told me that Jeremy’s lymphoma is in remission for the time being. That in and of itself is miraculous. He said that they haven’t found lymphoma in his spinal fluid yet and that if it is there, it will show itself. They plan to continue to test for it on a regular basis. We are praying it doesn’t appear. The doctor also told me that he had another patient about 10 years ago, very similar to Jeremy in terms of age and life situation, who had similar toxicity issues and is still around and functioning today. He has mild memory issues but nothing too serious. The hardest part right now is that no one knows the full extent of the chemo toxicity and to what extent it is permanent. In that regard, we are still watching and waiting.

I miss Jeremy terribly. Jeremy and I are one flesh and I feel his condition – the impact of the toxicity and his absence from our daily lives – on a level that no one else can fully understand. This is happening to our nuclear family and our children on a level that is incomprehensible to anyone outside of our circle, which can make this all the more difficult and isolating. My kids are increasingly aware of their father’s absence, they haven’t seen him or heard his voice in over six weeks. Our four year old son will do something and then immediately say “This will make my Papa happy, right?”. I try to keep them updated on how their daddy is doing. Our six year old daughter prays for him all the time. Anelise has spent nearly half of her life at our home with Jeremy away at the hospital.

I know this situation is very difficult for everyone who knows and loves Jeremy – his parents and siblings, and even some good friends, are making sacrifices to be at the hospital as much as they can, putting their own lives on hold. I am grateful they can take vacations and get away, they can take breaks and recover, rest when things are too stressful, life is too full. I am grateful for the times they have chosen to go above and beyond to be with Jeremy through the night, sleepless nights for those staying with him. I cannot be with Jeremy as much as I want to be and I’m so glad others can be there and are. But not seeing Jeremy on any given day, not knowing he’s OK, not knowing he knows I’m still there, not giving up on him, is simply not an option for me. He and I are one.

When I am not there, he asks for me – no one else. Whenever he was off the ventilator the nurses tell me he calls for me as soon as I leave his room to grab something to eat, they tell me he says my name in the wee small hours of the night. He isn’t asking for anyone else. I know that and it pains me not to be with him all the time. Now that my mom is back in town and able to be with my kids, I have greater flexibility to do all that I need to do at home with our children, at work and to also be with Jeremy. I am so grateful she is here to give me this priceless gift. I am so grateful that I can be with Jeremy more now that she is here. Since the beginning of this Jeremy and I said that we are Frodo and Sam traveling to Mordor. Neither one of them gets a vacation, check out for a break or anything like that until they both reach their destination… and I’m not planning on taking a break until we reach ours. This is my job, my role and I gladly accept, knowing no one else can be all the things Jeremy needs except for me. But it is hard, lonely and isolating. That is just the reality of this beast. I am eager to talk with Jeremy again, to have more connection to him, to have his companionship again.

I have responsibilities to my children and to my work. I am praying for the ability to do all the things set before me well. I am so thankful for a compassionate and merciful employment situation that has allowed me to be with Jeremy to the extent that I have been able. I am so grateful to friends that have been such sweet blessings to our children. My prayer continues to be that they will sail through this and look back at it as a happy time and that they remain innocently unaware of how scary things really are.

We don’t know what God has planned for us next but we know the road before us is still quite long and intense. We continue to pray, to cry out to God and say, “Dear Lord, may you delight in being glorified through your compassionate mercy on us.’ We need mercy, strength and peace. Thank you for continuing to pray for us all.

~~ Angela

Thank You For Loving Us All in Such Sweet and Special Ways

There are so many caring people doing special things for us everyday. I haven’t been able to keep up with sending personal thanks since we brought Jeremy to the ICU over a month ago. My apologies for not contacting each of you to personally thank you for your ongoing prayers, love and support. Thank you for your gifts of time – watching my kids, helping clean the house and yard, walking the dogs, preparing meals, shopping for us and other secret acts of kindness you are doing on our behalf. Thank you for your financial gifts – your generosity allows us to keep up with our financial obligations in spite of our dramatic decrease in income since Jeremy is unable to work and a dramatic increase in costs due to his medical needs, additional childcare expenses and gas going back and forth to the hospital. I honestly don’t know where we would be without the generosity of so many.

Thank you for praying with us and encouraging us through kind notes. I am especially touched when I receive letters from folks thanking Jeremy for his impact on someone’s life. We are so blessed to constantly learn of the fruit of his life and grateful he is loved by so many.

Thank you, sweet friends, that made a special effort this week to celebrate with us Eliana’s birthday on Wednesday, Anelise’s birthday and our tenth wedding anniversary on Friday. This was an emotional week for me to celebrate these special blessings with Jeremy in the ICU. It means so much to have sweet friends enter into our lives and delight in my children, making this week extra special and fun for all three of them and giving me a special anniversary.

Thank you for loving us all in such sweet and special ways.

 

~~Angela

I take back my comment about residents

I take back my comment about residents. Colin, the ICU resident, went high and low to get Jeremy on the schedule for the trach at 4 or 5 today and we are cautiously optimistic this will happen today. While Jeremy will be sedated once he’s out and won’t be able to talk, he should be able to come off the meds and hopefully begin the process of rehabilitation as early as tomorrow. I’m feeling thankful.

~~ Angela

“I want to speak to your attending now, please. Thank you.”

I know I am old now when I meet with attending doctors and they seem like they are the same age as me…and the residents appear to be mere babes. When I’m on a mission to make something happen, I’m not talking to anyone more than 5 years younger than me as I know there’s no chance they’ve earned enough pull to make some waves. “I want to speak to your attending now, please. Thank you.” Very satisfying. 

~~ Angela

Frustrated

Docs told me on Tuesday Jeremy needed a tracheotomy and they set it for today. Now there are no openings in the OR so they are saying we need to wait until Monday. They don’t want to over sedate Jeremy, so he’s very uncomfortable on the ventilator and very agitated. He can get a “push” of pain reliever but, due to the ventilator, is unable to request that himself. Without family here, he has no way to let anyone know his needs. Having him endure two more days of this isn’t acceptable. I’m fighting the good fight to get him in the OR and off this ventilator sooner than later. Thanks for your prayers!

~~ Angela

Faith, Hope and Love

Just spent more than an hour with a kindhearted Catholic priest praying for Jeremy. He reminded us that spiritual and emotional healing begins with forgiving others as Christ has forgiven us. He also encouraged us to take heart in the most important things – Faith, Hope and Love. What good things to ponder on our anniversary.

~~ Angela

Have You Ever Met a Complete Stranger Who Seemed Heaven Sent?

Have you ever met a complete stranger who seemed heaven sent? I believe, during those times when life feels overwhelming, heartbreaking. chaotic and confusing that God often sends us “borrowed angels”–earthly people who, at the oddest times and in the oddest places, are able to connect with us in ways that touch our very souls.

Yesterday, my husband, Doug, joined me on my early morning errand running. (As pathetic as it sounds, lately, the best quality time we have to connect is when we’re alone in the car checking life’s hum-drum items off our lists–getting the oil changed, picking up dry cleaning, running to Home Depot or to the bank drive-through.) My youngest brother, Jeremy, is battling for his life in the ICU at Rush Hospital in Chicago. This past month, the Mains family has tried our best to coordinate family member’s schedules to “cover” so that Jer is hardly ever left alone without someone right there beside him. Inevitably, that’s meant that hospital stays have become demanding, requiring us to stay longer and more frequently. (For me, the drive alone to the hospital takes about 1 1/2 hours each way, and that’s only if I’m able to avoid Chicago’s congested rush hour traffic.) Needless to say, finding quality time for Doug and I to really connect has been a minor challenge of late. Errand running has quickly become a practical, albeit, somewhat unromantic solution.

Our errand running yesterday was to Farm & Fleet (think: a farmer’s ultimate shopping paradise–the size of a Super Walmart on steroids) to get horse and chicken supplies and a new wheel for our wheelbarrow. Doug and I took the drive time to connect about Jeremy, whom I had stayed with in the ICU the night before. Jeremy, my sweet brother, is going into his 5th month of battling cancer. He is now on a ventilator, now unable to respond to our voices with even a squeeze of the hand, now on feeding tubes, now hardly able to see, now so skinny and frail that he no longer even looks like himself, now so very close to that fine line that separates life from death. My confidence wavers as I talk to Doug about my brother’s condition. Will God intervene? Will Jeremy survive, be healed, live? My faith has been so very strong, but now, at times, I can feel it shifting, shaking, slipping.

We arrived at Farm and Fleet, and set out to gather the various items on our list. We hit the garden section to find a new wheel for our wheelbarrow. And, that is exactly where I encountered my “angel”. I spotted a Farm & Fleet worker in his red shirt and asked for his help. Instantly, I knew this guy was somehow “appointed.” He was unlike any of the other workers at F&F that I’d ever met. He had an energy that pulled me to him. He was artsy, expressive, engaged, friendly, stylish–someone way over qualified, someone who I could see owning a Starbucks, managing a theater company, or some funky art studio.

“I’m trying to find a new wheel for my wheel barrow. Can you help?”, I inquired. “Well yes, certainly.”, he said. “I think they’re in aisle 14.” Then he looked me straight in the eye and spoke a simple truth that absolutely pierced my heart. “WAIT A MINUTE, WAIT A MINUTE. SEEMS I’M HAVING A CRISIS OF CONFIDENCE. THINKING WON’T GET ME ANYWHERE. I NEED TO CHOOSE TO BELIEVE. BETTER YET, I NEED TO KNOW. YES, YES, TOGETHER WE”RE GOING TO BELIEVE AND KNOW. NO MORE CRISIS OF CONFIDENCE. BELIEVE AND KNOW. FOLLOW ME. I”LL SHOW YOU THE WAY.”

I followed him directly to aisle 14, utterly dumbfounded. He had spoken exactly the words to steady my trembling faith. Honestly, part of me half expected to hear the theme from Twilight Zone begin to play over the store’s speaker system. I wondered if I might be able to detect a glow from his halo. Together, we beelined directly to the wheelbarrow section. “There we have it,”, he said. “When you believe and know, you find exactly what you’re looking for.” He handed me a wheel and also gave me a blessing, “Now have a peaceful day.” Almost speechless, I mumbled a thank you as he walked away and disappeared.

I instantly turned to my husband, Doug. “DId you hear what he said?!” Did you catch that!? That guy has to have been an angel, a messenger, or a walking, talking SOMETHING from God sent here to tell me that. I need to go find him. I got to tell him what that meant to me!” Doug, who is such a great guy, saw the familiar half-crazed look on my face. WIth a shrug that communicated “If you can’t beat them, you might as well join them”, he didn’t ask any questions, but immediately joined me in the quest to find my Farm & Fleet messenger. We scoured each and every aisle, covering every square inch of the store–twice. Then, out of the corner of my eye, I caught the glimpse of a red shirt heading out the back door. “That’s him!,” I called to Doug. “He’s heading out the back door. Follow me!” I picked up my pace and ran quickly, exiting the rear door to the storage yard, with Doug following closely behind. My messenger was right there, stacking what looked like feeding troughs.

Reading his name tag, I introduced myself. “Hi Gary D.” (Admittedly, I had to recover slightly. Somehow during our frantic search, in my mind, I had imagined he would have a more angelic name like Angelo, or Gabriel, or Raphael or something. Oh well, no complaints. Gary D. would have to do.) “I’m the lady who you helped find that wheelbarrow wheel. God used you today to speak to me when you said if you’re having a crisis of confidence then you have to choose to believe and know what aisle that wheel was in. You see, my brother is in the hospital, in the ICU. My faith has been shaking a bit. But, you spoke to my heart the exact words I needed to hear today. I just wanted to thank you. Today, I’m choosing to believe and know that he is okay. That he’s going to get better.”

Gary D. was gracious, empathetic, caring. As we said goodbye, he placed his hands on his heart and thanked me for telling him my story, saying “I’m all verklempt.” When we returned to our car, I asked Doug if he had any idea what in the world verklempt meant? I didn’t have a clue. I googled it. Verklempt: a Yiddish word that means “overcome with emotion.” People use it when they are so emotional that they’re on the verge of tears or at the loss for words.

I am too, Gary D. from Farm & Fleet. I am too.

 

~~Melissa Mains Timberlake

Borrowed Angels

Have you ever met a complete stranger who seemed heaven sent? I believe, during those times when life feels overwhelming, heartbreaking. chaotic and confusing that God often sends us “borrowed angels”–earthly people who, at the oddest times and in the oddest places, are able to connect with us in ways that touch our very souls.

Yesterday, my husband, Doug, joined me on my early morning errand running. (As pathetic as it sounds, lately, the best quality time we have to connect is when we’re alone in the car checking life’s hum-drum items off our lists–getting the oil changed, picking up dry cleaning, running to Home Depot or to the bank drive-through.) My youngest brother, Jeremy, is battling for his life in the ICU at Rush Hospital in Chicago. This past month, the Mains family has tried our best to coordinate family member’s schedules to “cover” so that Jer is hardly ever left alone without someone right there beside him. Inevitably, that’s meant that hospital stays have become demanding, requiring us to stay longer and more frequently. (For me, the drive alone to the hospital takes about 1 1/2 hours each way, and that’s only if I’m able to avoid Chicago’s congested rush hour traffic.) Needless to say, finding quality time for Doug and I to really connect has been a minor challenge of late. Errand running has quickly become a practical, albeit, somewhat unromantic solution.

Our errand running yesterday was to Farm & Fleet (think: a farmer’s ultimate shopping paradise–the size of a Super Walmart on steroids) to get horse and chicken supplies and a new wheel for our wheelbarrow. Doug and I took the drive time to connect about Jeremy, whom I had stayed with in the ICU the night before. Jeremy, my sweet brother, is going into his 5th month of battling cancer. He is now on a ventilator, now unable to respond to our voices with even a squeeze of the hand, now on feeding tubes, now hardly able to see, now so skinny and frail that he no longer even looks like himself, now so very close to that fine line that separates life from death. My confidence wavers as I talk to Doug about my brother’s condition. Will God intervene? Will Jeremy survive, be healed, live? My faith has been so very strong, but now, at times, I can feel it shifting, shaking, slipping.

We arrived at Farm and Fleet, and set out to gather the various items on our list. We hit the garden section to find a new wheel for our wheelbarrow. And, that is exactly where I encountered my “angel”. I spotted a Farm & Fleet worker in his red shirt and asked for his help. Instantly, I knew this guy was somehow “appointed.” He was unlike any of the other workers at F&F that I’d ever met. He had an energy that pulled me to him. He was artsy, expressive, engaged, friendly, stylish–someone way over qualified, someone who I could see owning a Starbucks, managing a theater company, or some funky art studio.

“I’m trying to find a new wheel for my wheel barrow. Can you help?”, I inquired. “Well yes, certainly.”, he said. “I think they’re in aisle 14.” Then he looked me straight in the eye and spoke a simple truth that absolutely pierced my heart. “WAIT A MINUTE, WAIT A MINUTE. SEEMS I’M HAVING A CRISIS OF CONFIDENCE. THINKING WON’T GET ME ANYWHERE. I NEED TO CHOOSE TO BELIEVE. BETTER YET, I NEED TO KNOW. YES, YES, TOGETHER WE”RE GOING TO BELIEVE AND KNOW. NO MORE CRISIS OF CONFIDENCE. BELIEVE AND KNOW. FOLLOW ME. I”LL SHOW YOU THE WAY.”

I followed him directly to aisle 14, utterly dumbfounded. He had spoken exactly the words to steady my trembling faith. Honestly, part of me half expected to hear the theme from Twilight Zone begin to play over the store’s speaker system. I wondered if I might be able to detect a glow from his halo. Together, we beelined directly to the wheelbarrow section. “There we have it,”, he said. “When you believe and know, you find exactly what you’re looking for.” He handed me a wheel and also gave me a blessing, “Now have a peaceful day.” Almost speechless, I mumbled a thank you as he walked away and disappeared.

I instantly turned to my husband, Doug. “DId you hear what he said?!” Did you catch that!? That guy has to have been an angel, a messenger, or a walking, talking SOMETHING from God sent here to tell me that. I need to go find him. I got to tell him what that meant to me!” Doug, who is such a great guy, saw the familiar half-crazed look on my face. WIth a shrug that communicated “If you can’t beat them, you might as well join them”, he didn’t ask any questions, but immediately joined me in the quest to find my Farm & Fleet messenger. We scoured each and every aisle, covering every square inch of the store–twice. Then, out of the corner of my eye, I caught the glimpse of a red shirt heading out the back door. “That’s him!,” I called to Doug. “He’s heading out the back door. Follow me!” I picked up my pace and ran quickly, exiting the rear door to the storage yard, with Doug following closely behind. My messenger was right there, stacking what looked like feeding troughs.

Reading his name tag, I introduced myself. “Hi Gary D.” (Admittedly, I had to recover slightly. Somehow during our frantic search, in my mind, I had imagined he would have a more angelic name like Angelo, or Gabriel, or Raphael or something. Oh well, no complaints. Gary D. would have to do.) “I’m the lady who you helped find that wheelbarrow wheel. God used you today to speak to me when you said if you’re having a crisis of confidence then you have to choose to believe and know what aisle that wheel was in. You see, my brother is in the hospital, in the ICU. My faith has been shaking a bit. But, you spoke to my heart the exact words I needed to hear today. I just wanted to thank you. Today, I’m choosing to believe and know that he is okay. That he’s going to get better.”

Gary D. was gracious, empathetic, caring. As we said goodbye, he placed his hands on his heart and thanked me for telling him my story, saying “I’m all verklempt.” When we returned to our car, I asked Doug if he had any idea what in the world verklempt meant? I didn’t have a clue. I googled it. Verklempt: a Yiddish word that means “overcome with emotion.” People use it when they are so emotional that they’re on the verge of tears or at the loss for words.

I am too, Gary D. from Farm & Fleet. I am too.

~~ Mellisa Mains-Timberlake

Jeremy is More Alert and Responsive Today

Jeremy is more alert and responsive today. I was able to tell him how Eliana spent her birthday. While he can’t talk while connected to the ventilator, he responds to directions, gives thumbs up or down and can squeeze a hand. It feels so good to connect with him, even on such a minimal level.

Jeremy is actually breathing well. His lungs are strong. His problem continues to be his inability to swallow, meaning without the ventilator keeping his airway clear, he chokes on his own saliva.

Tomorrow Jeremy will get a tracheotomy. This is a short to intermediate term solution with the hope and expectation that Jeremy will regain his ability to swallow and it can be removed. Once the trach is in place, he won’t need to be heavily sedated and can begin the process of rehabilitation.

Please pray with us that we have no more unexpected hurdles and setbacks.

Jeremy is still quite strong. Knowing Jeremy as I do, I don’t doubt that he is eager to start doing whatever it takes to regain his strength and ability to be fully functional. The sooner he can make progress, the more likely we can move ahead with a treatment plan that will keep him healthy for a long time. Right now Jeremy is not receiving anymore chemotherapy, so we just need this toxicity to clear out of his system as soon as possible and not cause any more damage.

Jeremy knows about the trach and seems ok about. Thanks for your prayers that the procedure goes well, he recovers well and we can begin the process of rehabilitation.

We so appreciate your support, love and prayers. Thank you!

 

~~Angela

Prayers for a Blasted Body

I have been praying over my son, Jeremy Mains, whose body has been blasted by chemotherapy. He is now experiencing the effects of a profound toxicity and is in the Intensive Care Unit of Rush University Hospital in Chicago.
I saw an intriguing movie with the report of an experiment conducted by a Japanese scientist. Water molecules, while viewed under microscopic conditions, actually changed when angry, blasting words were shouted at them. As I remember, the molecules would actually cringe and shrink and crumple up. (Check this out for yourself with on U-Tube with a search such as “impact of words on water molecules.” You’ll find a lot of examples in Japanese, but keep on, there are some in English.) When happy, affirming words were spoken to the water molecules, they actually expanded and danced and wiggled.
Now this makes all kinds of sense to me. Since the body is over 80% water, think of the impact of hateful, angry words—the diatribes people strike against us. It feels like someone has plunged a ragged sword through the soul. Then, think of the times when you have been in a place of happiness, where you were affirmed and appreciated and others spoke to you the significant meaning of your life. There is almost a physiological warming that heals and gladdens us, making us want to do better things and be better people. Think of how you feel when people thank you, when they say, “Oh, I love who you are. I love how you do this. I just have to tell you what I appreciate about you.” Something within your very physical beings sings “Be glad. Be glad.”
Proverbs tells us that “death and life are in the power of the tongue.” I believe it.
So I am trying gentle and quiet and positive pronouncements with Jeremy. I spent five and a half hours two days ago speaking words of life over his inert form. The room was quiet. There were no other visitors. There was no conversation. I had been fasting for two days and felt an anointing of love. He gripped both of my hands with his hands and listened as I went along:
Thank you dear body for withstanding these chemo blasts. You have been strong. You have been wounded, yet you live. What a fighter! What determination! What strength!
Now, out of the blasted disorder, we gently call forth order. Out of the darkness of the chemo poison, we call forth healing light. Become harmonious again; work together to be in unity—cells with the neurons, the heart with the mind, the mind with the lungs, the muscles achieving rhythm and strength, tendons and ligaments in harmony. Be loved. Be healed. Grow strong.
I go on: Be well, be happy. Begin healing. Take heart.
You will not always be this way. You will get strong. You will smile again. You will laugh. The palsy on your face will lift. You will cuddle your baby in your arms, and chase around with your son, and practice piano with your daughter. Your muscles will strengthen. Your balance will return. Peace be still. Be calm in the name of Jesus.
This is your mother whose voice you heard in the womb. You know my laugh; even the gurgles of my body were familiar to you. I am here. I am holding your hand. Christ is here. We believe in the Holy Spirit, the Lord and giver of Life. Do not be afraid. I was with you when you took your first breath and I am holding you now . . .
Well, you get the idea. Every affirming word I could think of, I spoke. Every healing command from Scripture that I could remember I spoke. When the fellow of hematology, who is on his case stopped in, I whispered, “We’re just doing a little word therapy here.” She thought I was doing a good job.
For good measure, when the room was quiet again, I raised my right fist in the black power sign from the defiant 60’s and forbid anything evil to touch my child. I stood before the windows and lifted my hands in praise.
Well—you get the idea. We mothers are prone to do radical things when our kids are in danger. We can be fierce in faith.
Thank you for praying specifically for Jeremy. Many of those prayers have been answered in this week. Now we need to agree together that unity and harmony will be restored in his blasted body. He needs whole days without emergency interventions where he can do gentle exercises in bed, sit up on the side of the bed, regain his balance, touch his feet to the floor. He needs the extreme drainage to stop so that he can gain his voice and strength enough to speak clearly. He needs time for simple swallowing therapy. Two days ago the ICU teams were talking about water around his heart, a possible blood clot in his lung; none of those things are being talked about today. Pray that unnecessary medical procedures (some are scheduled just in case of . . .) will not be scheduled. Pray that the toxicity will begin to recede.
And if you are speaking words of life to someone you love, feel free to embellish the above. Make the water molecules dance.

~~Karen Mains

Yesterday Was Another Difficult Day

Yesterday was another difficult day. I saw Jeremy late in the evening. Back on the ventilator, he was lying in his bed. But when I walked over to him and called his name, he did nothing. No slight movement, no turn in my direction, no squeezing my hand. I noticed his heart rate climbed when I spoke to him and went down when I stopped. That was it. Heartbreaking.

I waited awhile for the doctor to visit and was so grateful he gave me more than 30 minutes of time. He explained that Jeremy was in somewhat of a chemical induced coma, but not to worry, this is how we want him while he is connected to the uncomfortable and painful ventilator. He said he wasn’t worried about Jeremy at that point. The worry would be if we can’t get a Jeremy back to a healthy baseline. But those are conversations for a different time, hopefully a time that doesn’t come.

I hated leaving Jeremy there alone but I had to get home to relieve the sitter, to get ready for Eliana’s birthday.

I am braking. I noticed myself cracking a few weeks ago just as we entered this recent, relentless storm of setbacks. It’s getting worse now. Most of the time I feel immobilized, stalled. I don’t know which direction to go, I don’t know where to take the next step. I don’t know if tomorrow will be a good day or full of more hurdles. I use up all my energy just to get out of bed and enter into it, whatever it holds.

Whenever I’m alone – in the car, in my room, in the bathroom, the five minutes between meetings at work, the 30 seconds I’m waiting for the kids to come inside – I find myself crying. Many times they gut wrenching, painful cries. They come from someplace so deep inside, I don’t know where, and they literally hurt coming out.

I pray for strength to spend quality time with the kids and delight in their daily accomplishments, be soothed by their endearing laughter and unshakeable love. I take comfort in their innocence, so grateful they are blissfully unaware of the dark and dangerous waters we find ourselves in.

I’m braking from the crazy ups and downs, the emotional roller coaster. What it takes to pull off a birthday breakfast is one thing, but crying all the way to the hospital is another. Making those dramatic emotional shifts from enthusiastic, supportive mom to anxious, frightened wife is beginning to take their toll. I proudly tell the nurses and others about the girls birthdays and our upcoming anniversary, my voice quivering and crying halfway through. I’m so proud, so thankful for these sweet blessings, yet so scared of what may lie in the our path ahead. I feel like I’m coming apart, about to snap.

Between the tears in the car, I cry out to God. While I know He is still here, I haven’t felt him near for quite awhile. I see evidence of Him moving about but I desperately need so much more than that now. I used to pray for rainbows and saw them almost immediately. These days I am just praying for the storms to let up.

We were told that this journey would be hell. We just never anticipated what hell would be like.

I’m not giving up but I’m scared and tired and braking. I need something beyond me to keep going. These are the things I tell God.

Then I find myself in Jeremy’s hospital room. I say his name. With the slightest turn of his head, he looks at me. I tell him I love him and he strongly squeezes my hand three times “I.Love.You.” That’s all I needed.

Now we continue on…

Eliana Mains Turns 6 years Old Today

Eliana Mains turns 6 years old today. What a beautiful child! This lovely memory from last spring. She rushed, still in stocking feet, out of her house when we dropped by for a moment and beckoned us with this lovely little hand gesture that is so typical of Eliana. “Come! Come!” she said and ran across the thawing grass to the neighbors’ side yard. “Come! Come!” And when we hesitated–after all should she be outside in the cool weather stocking-footed? “It’s important,” she called. “It’s important!” So we followed her. “See!” She pointed to the hundreds of bluebell scilla growing in the lawn next door. She was right: It is important to see and to never miss the beauty growing all around us. Every day–even the hard ones.

Our book, “Tales of the Kingdom” is dedicated “To Jeremy, Who Has the Gift of Seeing”. How beautiful it is to think that his adorable daughter may go through life with the same gift.

Happy birthday darling.

 

~~Nina and Papa

Psalm 55:6-8

Psalm 55:6-8

6 I said, “Oh, that I had the wings of a dove!
I would fly away and be at rest.
7 I would flee far away
and stay in the desert;
8 I would hurry to my place of shelter, far from the tempest and storm.”

~~ Angela

This is a Big Week For Our Family

Tomorrow, October 8, it will be 11 years to the day that Jeremy and I first met. (Yes, we remember the day and celebrate it.) Wednesday, October 9, is our oldest child’s sixth birthday. Friday, October 11, is our youngest child’s first birthday. It is also the tenth anniversary of our marriage. 
I have been ill and don’t know when I can be with Jeremy again. It kills me not to be near him, not to let him know I’m still there, not to talk with him on the phone, not to connect with him. I know this will be a bittersweet week as we celebrate our many blessings without having Jeremy here to celebrate them with us. I am torn between figuring out times to make it to the city to see Jeremy and ensuring I am home to give my children great birthdays during this difficult period for our family.

Jeremy is much better at birthdays than I am. He will spend weeks planning gifts, ensuring the right cake (from the Mexican bakery) is ordered, and waking early to decorate the house with balloons and ribbons. He does this so much better. I have had a lot of practice forgiving myself for not being able to do things the way that only Jeremy can and I am proud to say that I did buy the cake (from Baskin Robbins) and we do have the gifts (things Jeremy and I discussed together a few weeks ago). I think the girls will enjoy their special days.

I don’t have the slightest idea on what to get Jeremy for our anniversary. We were so excited to celebrate ten years. Jeremy spent nearly a year planning our anniversary trip to the Dominican Republic set for the end of December. When we first received the lymphoma diagnosis it seemed quite possible that we would still be able to make that trip. If things had gone as planned, Jeremy should’ve had a stem cell transplant at some point in October, giving him time to rest and recover and hopefully be strong enough to travel. It seemed reasonable or at least not out of the question. But, things haven’t gone as planned….
These days when people ask me how Jeremy is doing I don’t really know how to answer. On the positive side of things, the doctors have told me that at this point if they were to examine Jeremy as a new patient there would be “no evidence of disease” in his body. His bone marrow is completely clean, his lymph nodes are “normal” and the mass he had in his gut back in June is no longer detectable. They tell us that Jeremy’s lymphoma has responded remarkably well to the chemotherapy. We are still waiting for 100%, definitive proof that there are no cancerous cells present in Jeremy’s spinal fluid, and so far preliminary test results and other factors indicate that his fluid is clean. All of these are things to be happy about, encouraged by.

Unfortunately, Jeremy hasn’t handled the poisonous chemo treatments so well. He is suffering from chemo toxicity in the form of encephalopathy. This essentially means an inflammation in his brain. Symptoms are similar to those in individuals that have had strokes. It means that Jeremy wasn’t able to walk a few weeks ago, something wasn’t connecting on a neurological level. It means that he sometimes drifts in and out of complete consciousness. It means he isn’t able to really swallow, another neurological issue, allowing secretions to pool in his throat making it difficult to breath and causing him to depend on the ventilator so he literally doesn’t choke to death on his own saliva. The neurological issues from the chemo toxicity are also most likely responsible for his facial paralysis and mini-seizures he had back in June. The doctors have said this, all of these things Jeremy is experiencing related to chemo-toxicity, are reversible but they don’t know how long it will take for him to recover.

Jeremy is very strong and from his grip and fight, even while sedated; it seems he is getting stronger. He really wants to just jump out of bed and walk home. I think his extreme stubbornness, his intense focus, and his determination are what have gotten him this far. He is a seriously strong man. On many levels.
At times, glorious times, he is awake a lucid. While he may not talk much, he does talk or squeeze a hand, letting you know he’s there, listening and connecting. While seeing him in his current state is very hard for me, I am so encouraged when I have a chance to see him shine through. He does things and says things that only Jeremy Mains would say, in the manner that only he would say it. When I hear him or see him pushing himself through exercises he learned from physical therapy, I’m really encouraged.

We are fairly weary and deeply wounded from this most recent battle. We still have good reason to hope – hope Jeremy’s lymphoma is gone, hope he can recover from the toxicity, hope we can continue with a treatment plan that will ensure Jeremy is cancer-free for a good while. We are weary, but we find strength in that hope. We find strength knowing so many people are praying for us as we go through this, cheering Jeremy on. We find strength knowing God is near and we are not alone.

Thank you for your prayers for Jeremy’s continued recovery. I am praying we have reached the very bottom of the full impact this toxicity will have on Jeremy and we only get better from here. I continue to pray that God will delight in being glorified through his compassionate mercy on us.

~~ Angela

Tonight I am Thankful For Friends That Extend Themselves To Help Us Get Our Kids To Our Church

Tonight I am thankful for friends that extend themselves to help us get our kids to our church.

There are a lot of wonderful churches close by but we made a very intentional decision to attend St. Athanasios Greek Orthodox Church. It is very important to Jeremy that our kids continuing growing in faith and participating in Church life by attending Sunday School. Yesterday, at the last minute, friends from church graciously picked up all three of our kids for a sleepover so they could go to church this morning and spend the afternoon with friends. My kids loved being with this kind and generous family and even said “let’s do that again tomorrow”. I am also grateful for the opportunity to be with Jeremy at the hospital knowing our children were safe and happy.

Thank you!

 

~~Angela

Jeremy Has Been More Agitated Now That He is Off The Ventilator

Jeremy has been more agitated now that he is off the ventilator. He is itchy and achy. His voice is weak and his whole body is uncomfortable. We are going to try to move him to the chair t see of that helps. This would be his first time out of bed in more than a week.

I am very tired. The fatigue of this most recent leg of this battle is setting in. This has been a particularly gruesome and relentless period. I am earnestly praying for a reprieve for Jeremy and those of us walking so closely beside him as he battles this horrific decease and the effects of the chemotherapy.

While we know this is happening for a reason and that God will be glorified through it, I am praying that He will delight in being glorified through His mercy upon us.

 

~~Angela

Home

These days, I’m finding it’s easy to get lost. My mind is consumed with thoughts of my brother, Jeremy, who is the the ICU at Rush Hospital in Chicago. I’m constantly in prayer, wondering when the test results will come back to indicate whether the lymphoma has spread to his brain or not. I contemplate how to best coordinate family members to “cover” shifts so Jer isn’t left alone. I’m constantly fighting back waves of emotion–the flow of tears as I consider the brutal beating cancer has taken on my brother’s body. And, I’m finding I’m continually getting lost.

Yesterday, I drove to Farm and Fleet to pick up grain for our horses. (Before we moved out to the country, I used to shop at Target to pick up items like paper towels, milk, and laundry detergent. Now, our new store of choice is Farm and Fleet, where people in plaid flannel shirts and green John Deer baseball caps buy things like fence posts, tractor parts, and cow utter cream). After loading four 50 pound sacks of grain into the back of my pickup truck I began my 20 minute jaunt home.

About 40 minutes into my drive, I realized that I had entered into Wisconsin, which is quite the opposite direction from my home. Somehow I had gotten desperately lost. I was driving on roads I didn’t recognize–back country roads far off the beaten path. “Where the heck am I? Wisconsin?! Really? How did I get so lost?”

I pulled out my iPhone and asked Siri, (my iPhone’s “intelligent personal assistant and knowledge navigator”) “Find directions back home.” Siri instantly replied, “Finding directions home.” Somewhere, deep inside–in the most romantic, idealistic part of me I thought, “Wow, God, I’ll bet you’ve got some amazing reason for allowing me to get lost once again today. Perhaps a charming, unexpected little farm stand overflowing with every variety of pumpkin and gourd imaginable? Or maybe an enchanting apple orchard or a hidden estate sale?” I kept my eyes peeled eager with anticipation as I drove. Nothing. Nothing. Nothing but winding roads and Siri continually navigating, “In a half a mile turn left. In 500 hundred feet turn right.”

I’ll admit, there was a part of me that felt let down the closer I got home. I mean, what was the purpose of THAT when I’m already feeling overwhelmed? Why did I have to continually get lost, only to find my way back home over an over again? As, I pulled into my driveway, a wave of relief rushed over me. I took in the beauty of the familiarity that surrounded me–the horses in the paddock, the barn kittens romping in the marsh, my son outside playing basketball, my daughter’s smile. Then it hit me. It all suddenly made sense: sometimes when we get lost–desperately, miserably, hopelessly lost, there doesn’t have to be any other reason than to know that there is always a voice, always a road that will guide and take us home.

The word home is an interesting one, isn’t it? The dictionary describes the word home as “a place of residence or refuge, a safe place where one feels they belong.” These past four months as my brother has battled cancer, I’ve found that the place in which I feel most at home is in my relationship to God. My faith and trust and hope have grown. My prayer life has deepened. And in the midst often feeling lost in the heartbreak, I’m finding God continually whisper, “Melissa, listen to my voice. Follow my directions. I’ll get you back. You’re not really lost. Turn here. Turn there. The most important thing is that you journey back to me. Welcome, my sweet girl. Welcome home.”

~~ Melissa Mains-Timberlake

Jeremy is Okay and Breathing on His Own

Just met with the pulmonary doctor. Jeremy is ok and breathing on his own. Apparently the ventilator is in place simply to protect his airway. So while it sucks to be on the ventilator it is good to know it is not exactly the same situation as earlier in the week. Now we just need to address the bleeding…

~~Angela