Lessons from a Long Season by Maura Timko

Originally Published March 30th, 2014 on the Charlotte Mason Institute web site

The day Maura died, I cried if there was any way for her to break through so I could hear her voice one last time. Then I thought how selfish, if she could speak, let her speak to her sons.  Later that day someone posted a link on Facebook to this article Maura had written 3 years ago.  It was as if the Holy Spirit led her to write it for that day, that request and her sons.

“There is a time for everything, and a season for every activity under heaven.”  Ecc 3:1

It’s been a long, cold winter in the Great Lakes region of the US.  In Ohio, where I live, it has been a season of record cold and snowfall.  There have been so many school cancellation days, our state government was forced to add more, so as not to extend the school year beyond the middle of June.  The Vernal Equinox was last week.  Yet, I see neither bud nor flower in my little yard.  Even as I am writing, the snow continues to fall in great, blowing swirls.  This time of year, I always find myself saying, “Enough, already!”  I am so weary of winter.

“He has made everything beautiful in its time.”  Ecc 3:11

Some seasons are bright and flowering, others rainy, green and filled with newness.  Another season may have the pale beauty of a world washed in white, or of a vibrant, multi-colored quilt stretched across the woods.  The Word of God tells me that there is beauty in every season, for those who would look for it, and not wish it away too quickly, before the lessons of the season have been gleaned.

I am guilty of having done this.  There are always times in life that are difficult, and we would like to impatiently hit the fast-forward button on life.  SKIP.  It’s exhausting to care for a house full of busy little children.  It’s not easy to encourage a husband who is unemployed.  Sometimes it is a difficult medical diagnosis that brings you to your knees.  It’s so easy to forget about beauty.

“Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking anything.”  James 1:2-4

My husband and I joined the ‘sandwich generation’ last year – homeschooling our 3 teenage boys, while caring for our 3 aging parents.  My 83-yr-old mother is a lovely woman, and she lives with us.  She is extremely kind, terribly forgetful, and always pleasant.  She is legally blind, and she needs assistance with many things.  We cannot leave her home alone.  She has some dementia as well, and she has had three major surgeries in the past 15 months.  My husband’s parents live 5 hours away, but they require regular assistance as they grow older and more feeble.

In this ‘sandwich’ season, I am thankful that my children are able to bear witness to my husband and I caring for our parents.  They see the hard decisions and the strain, but they also see the joy, the care, and the thankfulness.  Sometimes, they see our own self-pity and irritation.  But then they see repentance and forgiveness.  My husband and I must allow the Holy Spirit to first do His work in us.  Then, we can teach the lessons to our children – it’s the narration of life.

Instead of wishing away this season too quickly, my prayer is to embrace it fully.  I want to learn all the lessons that God has for me, and teach them to my children.  It’s a once-in-a-lifetime opportunity that we may otherwise miss.  It is so precious to see a teenage boy take his grandmother for a walk, to help prepare her dinner, or to cover her with a warm blanket.  I have seen my boys turn off a television show they were watching, so that their grandmother can listen to the evening news.  They will stay home with her on Monday evenings, so that my husband and I can go out to dinner.  Our boys are learning what it means to serve, and to lay their own ‘rights’ aside.  It is a lesson that God will use for the rest of their lives.  One day, they may be asked to care for a wife, or for children, or for a friend, or for us.

“Justice requires that we should take steady care every day to yield his rights to every person we come in contact with; that is, ‘to do unto others as we would that they should do unto us: to hurt nobody by word or deed.’  Therefore, we must show gentleness to the persons of others, courtesy to their words, and deference to their opinions, because these things are due.”  Ourselves, 137

Perhaps the most important lessons in this season are not about the subjects that my children study.   Maybe they need to learn the lessons of respect, duty, gentleness, courtesy, and deference.

Perseverance must finish its work.

Our school year does not look AT ALL the way I had planned.  In fact, my lesson plans from last summer have been discarded, and we have scaled back most of our subjects.  Others, we had to omit altogether.  But education is a life.  We have enjoyed six years of a great feast of ideas in our homeschool.  My children understand what it means to think for themselves.  They have learned to labor with their own minds, to read great books, to love truth and beauty, to educate themselves.  We are surrounded by great books in our home.  We share rich relationships, and we have the constant instruction of the Holy Spirit.  There is no need to worry about whether my children have ‘done enough school’ this year.  They are learning the lessons that God has given, laid upon a solid foundation.  So, instead of anxiety and fear of the future, the fear of not having ‘done enough,’ I choose gratitude.

“The grateful man has a good memory and a quick eye to see where those who have served need service in their turn.  Especially does he cherish the memory of those who have served him in childhood and in youth, and he watches for opportunities to serve them.  Gratitude spreads his feast of joy and thanksgiving for gifts that come to him without any special thought of him on the part of the giver… He is thankful for all the good that comes to him.“  Ourselves, pp. 110-111

It occurs to me, as well, that these hard seasons are opportunities to further lay the rails of habit.  Learning to walk through a difficult time, with thanksgiving, trusting the Lord to lead you, makes the next hard season easier.  (There will always be a next time.)  Adversity smooths out our rough edges, allowing us to more easily overlook the small things that drive us crazy.  We come into the next season changed, equipped for whatever God wants to do in the next season.  It trains our eyes to become quick to see those in need, and to lay ourselves aside.

“Never let us reflect upon the small annoyances, and we shall be able to bear the great ones sweetly.  Never let us think over our small pains, and our great pains will be easily endurable.”  Ourselves, p. 90 

I glance back at our school year, with all its stops and starts.  It was very bumpy, and in many ways, not so very pretty.   I see everything I had hoped to accomplish, but failed to do.  I see the field trips I wanted to take, but didn’t.  There were books unread, pages unfinished, chapters missed.

However, I also see how my children have grown this year.  They have taken on projects and studies of their own, read books that were never assigned.  They took things apart and put them together again.  They wrote in journals, wrote computer code, and wrote poetry.  They watched and performed Shakespeare.  They took pictures of nature’s beauty.  They dug for fossils and minerals, and came away with treasures.  They started a worship band with some friends, and are writing their own songs.  They are leading Bible study with groups of younger children at church, and helping in the nursery.  They ski and they swim.  They cook, crochet, play instruments and draw.  They care for their grandmother.

“It is quite plain that to think fairly, speak truly, and act justly towards all persons at all times and on all occasions, which is our duty, is a matter requiring earnest thought and consideration – it is, in fact, the study of a lifetime.”  Ourselves, p. 138

I know of no way to document the lessons we learned, but yet, those are the ‘study of a lifetime.’  I can smile in this season, at the end of a long winter.  I see that my 3 teenage boys, approaching high school graduation in the next few years, have their feet set in a very large room.

That is all the progress I need to see.

“The question is not, – how much does the youth know? when he has finished his education – but how much does he care? and about how many orders of things does he care?  In fact, how large is the room in which he finds his feet set? and, therefore, how full is the life he has before him?”  School Education, p. 171

From: Timko, Terry M 
Sent: Wednesday, July 26, 2017 7:43 PM
Subject: Maura Update July 26th

Dear, Dear friends,

As you have likely heard by now Maura left us Sunday morning to be with the Father in heaven where I am sure she heard “Well done, good and faithful servant!”  This is not a hope, but a confidence, a joy in knowing Maura is with our Father. She is part of the “great cloud of witnesses” worshiping and interceding as she was made to do.

It is a bit odd and even unnerving how well we are doing.  We are sad, happy, tiered and encourage all at the same time.  This has been a long couple of chapters in our lives and I thank you all for sharing with us and for all your support.  There is so much bouncing around in my head.  I had thought I could get more of it down on paper to share with you in this update but I need more time to process.

The day she died, someone shared an article Maura wrote 3 years ago which I had never seen: “Lessons from a Long Season”.   It brought me great joy to hear her “voice”.  It is as if the Holy Spirit led her to write it for that day and the Lessons she wrote of prepared her for the journey of the past year .  So rather than my rambling I’m going to let you hear her too.  I’ve reposted in on a work in progress blog I’ll be posting other things as a remembrance of Maura including these updates and some of your responses.  You can find the article here: https://mauratimkosjourney.blogspot.com/

I will probably follow-up with another note next week as the service comes together and I’ve had more time to collect my thoughts.  I’ll also post some of the amazing stories and encouragements folks shared with us as well as post pictures of many of you and Maura from this past year and over the past decades.  If you have any please send them to me – Thanks.

Memorial Service Logistics:

You all should have received an email/evite from my friend Arnaldo Vazquez copied below. Please let him know, ideally through the evite (mine attached) if you will be attending the service, banquet and if you need a room.  As the banquet is lightly catered and slightly pot luck, we would like a headcount.  If you would like to make something for the banquet please contact {contact info deleted}.

In loving memory of Maura Timko - 11/7/1969 - 7/23/2017. Beloved wife of Terry Timko, Mother of Daniel, Josh and Ethan. Forever in our hearts. A memorial service will be held at the Vineyard Church (Tri-County) on Saturday August 5th 2017 at around 11:00 AM.  A reception immediately following at DoubleTree in Blue Ash, about 10 mins from the Vineyard Church (6300 E Kemper Rd, Sharonville, OH 45241, 513.489.3636). 

More Details:

1)      Dress code:  The service is casual, come as you are, Maura would not want it any other way.

2)      Many people have been asking about where to send flowers or donations.  Terry has been very touched by these gestures.  In this regard he has asked me to communicate 3 options:

Option 1: Donations to Hospice of Cincinnati under the name of Maura Timko (Hospice of Cincinnati, C/O Bethesda Foundation, 10500 Montgomery Road, Cincinnati, OH 45242). Terry and Maura have always been supporters of Hospice and were blessed by their care in this season.

Option 2: Boys Education. Go to any Huntington Bank and make a deposit to the Timko Family Education Fund.

Option 3: Alternatively you can mail checks to 3528 Stettinius Ave. Cincinnati, OH 45208 made out to Hospice (see details above) or Timko Family Education Fund, or drop them off at the service Saturday the 5th.

3)      Several people have offered their homes for those from out of town who don’t want to incur the cost of a hotel.  Contact {contact info deleted} if you would like to take up this offer.

4)      We reserved a block of rooms at the DoubleTree in Blue Ash (this is where the reception will be as well, 6300 E Kemper Rd, Sharonville, OH 45241, 513.489.3636) and 10 min from the service (5 if you drive like Terry). The rate is $116. Just call and tell them you are with the Timko party to get the rate.

5)      The reception will be lightly catered and slightly pot luck.  Several people offered to make food for the reception. If you are interested please email {contact info deleted} who is coordinating this.  Please bring Tupperware as I’m sure we will have too much food.  Maura always liked to feed people so it will be fitting that you all go home with some :). 

6)      Accept the invite and on comments section, answer the following:

-Attending the memorial service? Yes/No

-Attending the reception? Yes/No

That is it for now friends.  Know we are still doing remarkable well.

Terry, Josh, Ethan and Daniel.

Josh Timko's Facebook post upon his mom's passing

Thank you Maura for being an outstanding mom ❤.️ I couldn't have asked for better. Strangely enough, it's a relief to know you are with the Lord now.

The Loneliness of a Tower Crane Driver
by Elbow
[This is a song I listened to with her a lot, and it holds a particular meaning to both her and my life]

"Got to get out of TV
Just pick a point and go
The ticker tape tangles my feet
As I search for a face that I know

Come on, tower crane driver
There's not so far to go

I must have been working the ropes
When your hand slipped from mine
Now I live off the mirrors and smoke
It's a joke, a fix, a lie

Come on, tower crane driver
Oh so far to fall

Send up a prayer in my name
Just the same
They say I'm on top of my game
Gentle gentle love
Send up a prayer in my name"

Josh Timko's Facebook Post the week before she died

Regarding my mother, Maura Mullane Timko: IMPORTANT!!

Hey guys, there has been some confusion about my mom's well-being, so I wanted to clarify and let you guys know that she is indeed alive. This will be on her timeline so people can know this.

Thank you to everyone who are sharing memories, saying thank you to my mom, and just offering condolences. It is really blessing my family and I; we read all of them. You are welcome to continue making these posts, and hopefully because of this one, there will be no more confusion.

The reason that there is confusion is that my father sent out an email to an email list, who have been receiving frequent updates regarding my mother's cancer over the past year or so. The latest update was something to the effect of "Maura is likely to see the Lord soon, and her condition is deteriorating." A lot of people responded, knowing this context, either via email, Facebook or both. However, people have read the Facebook posts (the ones that were in response to the email) without knowing about my father's latest email, and therefore, the context. Because of this, there are people who have a *very reasonable* misunderstanding that my mother has already passed away. I'm more than glad to make aware this misunderstanding to you, and let you know that she is fine as of right now.

I would also like to let you know how I see everything. I still have full faith that God will heal her, yet at the same time, I am *amicable* with any outcome of the situation (which means I, in a way, disagree with some of my father's statements that he made in the email, implying she will pass away soon. At the same time, I understand where he is coming from). The doctors gave her 2-3 weeks at most. That was about 5-6 weeks ago. They gave her 3-9 months, when she was first diagnosed... That was over a year ago. I believe that God is bigger than her cancer, though whatever happens, I know she will be fine. Maura either gets to stay with us a little longer, or she gets to be with Jesus forever. It's a win-win situation in my mind, it is just emotionally difficult seeing her go through this and seeing her mentally deteriorate. I have also received confirmation in many ways about her receiving healing, some of which are really cool stories that are unfortunately too long to tell in a post like this, but if you are interested, just message me privately.

Finally, as you might expect, this is a very strange time for my family and I because all of our reactions, responses, and emotions are nothing like what we expected, for better or for worse. I know that for me, this is uncharted emotional territory and therefore, very confusing. I sometimes don't know what to feel, and Satan has been trying to deceive me and convince me that my being okay with whatever happens is actually just apathy for my mom, though I know that is a lie because I love my mom. God has given us this peace that surpasses all understanding, yet there is still fear and grief. So, in addition to prayers for healing you have all been so generously praying, I would *greatly* appreciate it if you asked the Lord to eradicate all of that fear and grief as well, and for us to be completely and totally at peace, my mom included. Thank you everyone for being with us in this time❤️❤️. In the future, we will look back fondly and see all of the people - you people who were there for us.

From: Timko, Terry M
Sent: Friday, July 14, 2017 9:53 AM
Subject: Quick Maura Update - July 14th

Dear friends and family,

Sorry there hasn’t been an update since the 23^rd of May and that this one is really just the facts – I don’t have the time or energy to share a lot about the journey at this time.  The past 7 weeks have been rich, hard, busy and dynamic.  You will be pleased to hear that Maura’s spirits and mood are very good.  Amazing.  She is not in any pain, not scared.  God is good.  Unfortunately, but as expected, her body is failing and we have a week or 2 left.  She is proving stronger than the doctors and nurses expected.

She had well over 50 different visitors (I’ve lost count) in the weeks following that last update.  We were so blessed by all the people who came to share how Maura had impacted their lives over the years.  Really incredible.

We have been in home hospice the past several weeks which has been very helpful.

Funeral Logistics:

Our plan is to have the funeral on a Saturday after Maura dies and at least 10 days after to give people the opportunity to travel.  We will have a service in the chapel at Vineyard Cincinnati which is in the suburb of Springdale, followed by a catered informal banquet nearby where friends and family can connect and share stories of Maura.  Current guess is Sat July 29^th or August  5^th.  We are looking into getting a block of rooms for those who are traveling in.

For our planning purposes please let me know if you will be coming in from out of town AND if you are local if you expect to make the funeral and banquet.  I’d like to get a rough headcount upfront.  I may set up an evite but know not everyone on the DL is that web savvy.

That is it for now.  This has been an amazing journey with an amazing woman, God and community.  I look forward share more with you in the future.  Know that this life is just a vapor in the span of eternity and as we step back to realize this the perspective it gives reveals our need for a relationship with our God, is great comfort in times like these and empowers us follow the path our good Father has for us.

I bless you all.  Thanks.

Terry

From: Timko, Terry M
Sent: Tuesday, May 23, 2017 1:36 PM
Subject: Maura Update May 23rd

Dear Family and Friends,

It has been since January that I sent out one of these updates, primarily because there was very little to report and life got busy with work, my father’s stroke, Maura’s care, the boys, …  Anyway, we started back on the clinical trial drug plus chemo in Cincinnati early January.  January, Feb & March were great.  We even snuck in a 5 day cruise and started a couples group in our home.  But for the past 2 months Maura has been having increasing neurological symptoms not unlike what she experience with treatment related edema back in the fall.  Unfortunately, Maura’s most recent MRI showed that her symptoms were related to tumor growth and not a side effect of the treatments.  We have confirmed these findings and there is no other viable avenue of treatment. The doctors feel she has a few months left during which time her symptoms (primarily memory, fatigue and mobility issues which leads to some disorientation) will slowly increase.

We know this is hard news for those who care for her, and will impact people in different ways.  While we are very sad and still praying for a miracle, we are still doing remarkable well given the news.  Maura is not scared.  This sounds strange to many, but we know, have always know beyond a shadow of a doubt, that the Lord has saved us from death and she will be with Him and that is good.  I will miss her terribly, as will many of you, but am blessed beyond measure to have her as my best friend and wife.

Her quality of life is still high, she is not in any pain, or having seizures, changes in personality, …  While she is really slowing down, she got to spend some quality time this past week with Daniel before he headed to LA – he starts work at Blizzard today and we are very proud - went to Josh graduation last week – again very proud - and Ethan’s swim meet this past weekend.

I want to allow people the chance to visit before her condition worsens without over whelming her.  I also understand if it is too hard.  Txt me (with your name – don’t assume I have you # in my phone) if you would like to stop by.

A lot of people have been asking what we need.  I really don’t know yet.  I suspect this will get hard, a flurry, as the weeks go on, so maybe some meals and help around the house.  Maybe visit her mom if you know her as this is very confusing to her.

I do have an ask for those of you that have had the pleasure of knowing Maura well.  Over the months people have been sharing stories of Maura with me, how she impacted their life.  I would like to collect these as a tribute to and an encouragement for her.  If you have a story please email it to me.

Thanks.  That is it for now.  Thank you for your great support.  I will share more details as they are available.

p.s. pic of Maura the boys and I at Cactus Pear for our 25^th Anniversary in April:

Terry 

From: Timko, Terry M
Sent: Tuesday, January 03, 2017 5:15 PM
Subject: Quick 1/3/17 update on Maura as promised

Friends,

Maura had her MRI and we saw the doctors here in NYC today.  We don’t have a quantifiable radiology report yet but we received very good news: all tumors look smaller, edema way down, no new tumors.  I think it is fair to say the treatment and prayer has been effective and we will continue both.  Since Maura has been on a drug to reduce the swelling during the break in treatment she is out of the clinical trial (which is OK) and we will resume the immunotherapy treatment in Cincinnati.  The doctor does not expect edema like last time for a variety of reasons.  Maura’s primary neurological symptoms, short term memory issues, speech & fatigue, should continue to improve slowly.

We had an attitude of expectation going in, not anxiety, but now that we have good news we are finding it a bit surreal.  We have a new lease on life.  I’m not sure we thought much about plans beyond today.  So the question presents itself as how do we use this time?  I believe God prepared us for this journey and this journey has prepared us for the next.  For now we are very thankful and looking forward to the future.

                                                                                                  

- A very thankful Maura & Terry

From: Timko, Terry M
Sent: Monday, January 02, 2017 6:31 PM
Subject: A quick update to a smaller group

Dear Friends,

Thanks for your concerted prayer, worship & support.  Maura just reminded me that “before the battle are the Lord’s worshipers and in this battle that is you. It is the Lord’s battle and not ours.”

We also wanted to let you know we had a great and peaceful drive yesterday with good worship.  Tomorrow should be a big day here in NYC with testing, results and decisions.  Then we have one more appointment Wednesday AM before our drive home.  We have an attitude of expectation and not anxiety.  Maura asks, in addition to your prayers for her, you pray that I not be swallowed up whole by HP (work) or other drama (floods, family, …) come Thursday regardless of the outcome.  Also please pray for peace for our boys and especially Josh who is at the Passion conference this week in Atlanta.

I will use this distribution for a short update tomorrow followed by an update to the larger community Wednesday or Thursday.

Love Terry & Maura

From: Timko, Terry M
Sent: Saturday, December 24, 2016 11:13 AM

Subject: Maura update Dec 24th, 2016

Dear Family and Friends,

It has been 8 weeks since the last update and this is turning into an unintentional Christmas greeting as I’m finally finding the time to wrap it up (Ha!) on Christmas Eve.  I know this time of year is a mixed bag for people.  For many it is stressful or sad, for others it is a joyous time with family and others a non-event.  Our prayer is that you would find peace in the chaos, meaning in your activities and interactions and draw a little closer to God.  I think this prayer is good for any time of year, but I know at least for us in this season, this year, and with teen boys, it is something I need to remind myself of as well.

I actually intended to send an update after our last trip to NYC but for a while there the news changed so frequently, what ever I wrote would quickly become inaccurate.  Then I was too busy and spent the time I had with Maura and the boys and kept on top of work.  Thanks to all those who reached out directly and indirectly with concern.  I did not intend to create distance nor cause alarm with the lack of an update.

As you will read we’re still in a waiting place amidst very busy lives, but continue to do well, growing personally and spiritually.  As I look back over the past 6 months, this story is as much about how the journey changes the characters (you and us) as it is about the journey itself.

I am so thankful for how much Maura has recovered.  While we are still dealing with issues like memory and fatigue, and trying to figure out the new normal around the house with the boys, our schedules and my work, it is so much better than times in the ER or ICU, just less focused and more busy.  Those who interact with me have probably seen I am very hopeful but stressed and noticed I’m short (not just in height) and more hyper-kinetic than normal.  Please don’t take this personally.

Clinical Update:

After a 10 week break from treatment and stay in the ICU, we went back to NYC on Oct 25th for an MRI and to restart immunotherapy.  Because of the continued edema (swelling in her brain) the MRI was inconclusive with regard to tumor progression.  Despite the fact the MRI showed more swelling than expected and the immunotherapy was the primary cause of the swelling, we decided to go forward with treatment because we believe it to be effective.  We hoped to get 2-3 more treatments in before having to take another pause.  However, a week after the treatment her symptoms worsened.  We tried to manage them but had to stop again because we did not want to land her back in the ICU or cause more injury.

So we came up with a new plan, which was to ween her off of steroids and use another Chemo drug, Avastin, to reduce the inflammation.  Then she would get another “cleaner” MRI Jan 3rd to inform what to do next.  We had been avoiding the Avastin because it kicks us out of the clinical trial.  That said one of our options may be to resume the immunotherapy outside of the trial w/ or w/o the Avastin.  We may do this here or in Cincinnati or may choose another path.

Since that visit to NYC we have been managing the swelling to reduce her neurological symptoms and dealing with the side effects of coming off steroids, the Avastin and her compromised immune system which resulted in a persistent sinus infection.  While all of her neurological symptoms have improved beyond what was expected, the past 2+ weeks fatigue has really set in and is amplifying her remaining neurological symptoms.  The fatigue may be related to a) the sinus infection, b) the anti-seizure medication, c) tumor growth, d) the Avastin, e) all the blood pressure meds she is on because of the Avastin or f) the fact her body is still adjusting to living life w/o steroids and likely a combination of several of these.

Reflection:

While our focus seems to be narrowing, we are growing and learning many things through this cancer journey and just living life with all of its regular joys and challenges.  There is so much I’d like to share as many of you have shared truth, correction and experience with us over the past 7 months. Unfortunately there is not the space or time now.  There are a few things which have come up repeatedly and warrant touching on.  I know my perspective here may be foreign to many of you and I struggle most days to keep myself together so this may sound odd.

From the start I had said Worship was an important part of this journey.  Worship is an overloaded term in our current context.  It usually means songs sung at church, or Christian songs on the radio (or Spotify).  When I say worship here I mean songs sung to God, turning our focus to Him and His truth vs. our natural perspective, and songs sung in petition or submission – prayers – “change my heart God”.  As I have written here we’ve had people come to Maura and my side to worship with us at the hospital and our home.  We made YouTube and Spotify play lists, and listened to old CDs on drives to and from Rochester and NYC.  Many of these songs have become anchors and anthems on the journey (see sample below my signature).

In this season it has been difficult to focus on God in quiet times or regular rituals as there is very little regular or quiet in our lives right now.  Worship has enabled us to quickly break through, connect with God, really overcome current fears and snap back to proper perspective.  It is one of the things I am most thankful for and at the same time don’t do enough of.  One of the things we’ve come to realize is how formative worship has been over the seasons of our lives.  God used the songs we engaged to prepare us for this time and I’m sure future seasons.

Next, I’ve been confronted with the possibility that I have been trying to redeem an unredeemable situation.  Looking for meaning where there is none.  After a lot of prayer and reflection I’ve reconfirmed my belief that God redeems all things we bring to Him.  The reality is our God and Father has an enemy and as a result we live in a broken world where things like this and far worse happen – cancer, addiction, war, poverty, loneliness, … is the nature of the world we live in.  It is equally true that our God and Father loves us, wants a relationship with us and can and does redeem even most difficult situations, using them for good.

Finally miracles and healing.  Even if I had not seen them happen, I believe in miracles.  So many have prayed for a miracle and I continue to do so as well, medical or otherwise.  I don’t know why He chooses to heal one person and not another, and it is the exception not the norm.  Regardless, all healing here in this life is temporary and there is a much larger context we are operating in than we realize.  This larger context is where we need to focus and I encourage you in this season to slow down a little and turn your heart and mind to thinking about that bigger picture and listen to hear what God may be saying to you personally now.

That is it for now.  Have a great break if you get one, I know I am hoping to.  Thanks again for bearing with me and all your support of Maura, the boys and I.  I should get another updated out shortly after the Jan 3^rd.  It will probably be brief as it will either be GREAT news which we’ll want to get out quickly or bad news which we will have to deal with – I think it will be good, but I really have no idea, which is part of the journey.

Love, Terry and Maura.

"Nothing I Hold On To"

I lean not on my own under standing

My life is in the hands of the Maker of Heaven

I give it all to You, God

Trusting that You’ll make something beautiful out of me

I will climb this mountain with my hands wide open

There’s nothing I hold onto

https://www.youtube.com/watch?v=gmm8ETk70lg

{If I had to choose one song that symbolized this journey and brought us the most comfort it would be this one.  It has been a constant in our lives since Janet brought it to us in the hospital back in May of 2016.  I will forever think of this as Maura's anthem as it so clearly represents her approach to cancer and life in general}

From: Timko, Terry M
Sent: Friday, October 21, 2016 6:51 PM

Subject: Maura Update - Thursday Oct 20th - Character Development

Wow it has been a month since the last update and this one feels a little rushed.

As reported last time we have been in a much needed peaceful period with Maura taking a break from treatment, letting her brain heal before we begin the cancer fight again.  For us this chapter has turned out to be about character development, reconnecting with and getting to know people close to our story better.  We’ve been able to spend quality time with friends and family, process through what’s going on, share our story and gain from others knowledge.  It has been good to be home and be with the boys.

Maura has been really intentional with her limited time and energy spending it with the boys, meeting with and hanging out with many of you, pushing her therapy and getting neurological rest.  We continue to cover her with prayer and worship and hope to have another group worship session in a week or so.

I’ve gone back to work full time which has gone really well but definitely an adjustment with all I have on my plate.  I have to admit that I’m in a pretty dry place spiritually and need to take better care of myself physically.  Sleep is a real issue.  So I am really looking forward to ManCamp this weekend with 2,000 of my closest friends J.  Highly recommend checking out the video and go next time if you can (I hear WomanCamp is awesome too), it is amazing how much healing and transformation can happen in a weekend.  I’m hoping the Lord uses it to refresh me and kick me out of the funk I’ve been in.

Clinically we are 7 weeks out from the ICU and a lot of steroids later Maura’s symptoms have improved a ton.  Language is labored at times and her short and long term memory are still compromised resulting in slow processing.  Without further brain injury from the tumor or swelling her short term and working memory should improve on its own and her language should improve as she works it and the neural pathways re-route.  Some of this may also be related to residual inflammation in her brain.

While the steroids helped reduce the swelling in her head, they have also taken the expected toll.  She is only sleeping 3 to 5 hrs a night and is retaining a lot of water (like 10-15lbs) which has been really limiting her in many ways.  So they started to taper her steroids about 2 weeks ago in preparation for starting treatment next week - 2 weeks earlier than anticipated.  The results are some of her neurological symptoms have started to worsen at times over the past 2 weeks which has been discouraging.

So we are driving to Memorial Slone-Kettering in NYC Sunday/Monday (they don’t want her flying) where she is getting her MRI, blood work and seeing the doctors.  Hopefully we get good news and they start her Therapy Tuesday and we drive home. The we would be back on our every other week to NYC schedule until her symptoms warrant her staying between treatments.

As we start the immunotherapy it should trigger her immune system to attack the cancer which will lead to a return of the swelling and related neurological symptoms.   She should still be OK for a couple months as the symptoms (hopefully) come on more slowly w/o radiation, flying and chemo.  When she can’t tolerate it any longer we’ll take another pause in the treatment.  Then rinse & repeat.  That’s the plan at least.

Our prayer is for good news on Tuesday, for clarity in decisions required, that she can tolerate the treatments and a high percentage of the tumor cells are susceptible to this treatment.    We also ask that you pray for sleep and the side effects of the steroids would diminish quickly now that she is on a low dose of steroids.

That is all I have for now.  Look for another update next week.  As always we love you and thank you so much for your remarkable prayers and support.  God is good.

-Love Terry and Maura

From: Timko, Terry M
Sent: Saturday, September 17, 2016 1:25 PM
Subject: Maura Update - Sept 15th

Dear Friends and Family,

There’s lots of ground to cover this time including a note from Maura.  As a result this update is longer than usual, so please feel free to just check out the Short Version below.  Also sorry I did not get this out when we got back from NYC this week, but I’ve been crazy busy getting life back in order with all the medical/insurance, basement flood, work, travel logistics, back to school, and getting a new and sustainable normal in place after being gone for the summer.

I’ve been using the metaphor that God is writing our story.  Well I believe we are starting a new more peaceful chapter.  A chapter where we get to spend more time with friends and family who are sharing this journey with us.  One of the things I have learned through this is that if you are not intentional about staying connected, time, day to day concerns and desires too easily creates distance between the people we know, care about and love.

As we’ve go through this I’m also learning a lot about how we deal with pain, stress and adversity in different ways.  While most have their place, some are more healthy and some not so much.  While this season is hard and painful, it is at the same time redemptive and beautiful.  Hard things are not inherently bad.  It is crazy how much the Lord has grown us and how well we are doing.  We see every day as a blessing and are intentional with our time and energy.  As we do so we are seeing God’s hand as we walk this out.  Our journey has touched many people in so many different ways.  Our prayer is that it draws people closer to Him, that Maura be healed and if not we are given the strength to walk this out is a way that glorifies Him.

Maura on our way home from NYC this week with flowers from the lovely people at the Double Tree Chelsea, who have been so kind to us and a real blessing.

Short Version:

Maura has recovered remarkably well since her trip to the Hospital.  I would say she is back to where she was 10 weeks ago and continues to improve every day.  We received good news from the post treatment check point in NYC this past week, not great but certainly not bad either.  They are going to let her brain heal another 2 weeks and then start her on the immunotherapy regiment again as long as she can tolerate it as it appears to be working.  She may also get another round of radiation.

{We joked at the time that there was a dragon in her head which you can see if your imagination lets you on the right of the lower left image.  I think her doctor, Dr Antonio Omuro, was amused by this and even more surprised by my comments regarding Zika and potential impact on Glioblastoma, but that is a conversation to be had over a beer sometime - there may be something to it, time will tell}

We have been blown away by the support we have receive from all of you.  It’s sometimes hard for me to receive but Jeff convinced me to let him set up a GoFundMe for the boys and for misc. expenses because many people want to help but not everyone can drive or cook.  The response is truly humbling.

Maura’s Note:

Hello Friends & Family,

This weekend marks of 4 months realizing that I have brain cancer.  It's been very aggressive, and we weren't sure I would even make it these four months.  Three weeks ago, I collapsed at home (radiation and other treatments created a lot of swelling in my brain).  I was brought to the ER/Neurological ICU at Good Sam and stayed inpatient for 6 days.  My doctors and nurses were not sure that I would survive - I had a large amount of pressure my brain.  So many of you were praying for me and for those doctors and nurses.  I began to heal very quickly.  At first specialists, nurses and therapists agreed I might be able to return home at some point, but needed  inpatient rehab first.  But the Lord was healing me because YOU have been praying!  After 4 days in the ICU, I was walking whole flights of stairs and all the hallways with very little assistance.  I was discharged after only 6 days and was sent back to HOME, and not to rehab.  Every day I grow stronger, and yesterday, I walked 2+ miles (Yes - miles!).   Our family KNOWS that it is only the presence of Jesus accomplishing this in me.  We still do not know how many days/weeks/months/years we might enjoy together.  However, that is true for each one of us; we NEVER know.  We cherish every day and the people in our lives (YOU!!!).  I have begun a little email, text and phone - very, very slowly.  I would not be able to write an update, but while the Lord continues to heal me, I'll get there.  My husband has been AMAZING (I already knew that), and every single day with him and my 3 boys is a blessing.  Thank you for praying, loving, driving, and serving our family.  We love you all, and it is a joy to share this journey.

MT

Maura also wanted me share a song has the Load brought to her mind and resonated with her in this the last week or so.  It is The Struggle by Tenth Avenue North.   “It captures the essence of this journey so far for her, the whole album does.  Even though we are struggling we are not struggling to be free,  Jesus has already done it. He is transforming us through this struggle. We wrestle in the day to day, but it is Him doing it in us, we are not trying to find meaning or salvation, just transformation to be more like him”.

https://www.youtube.com/watch?v=xSH3Q6O_7w8

Longer version:

Maura is doing tons better symptomatically as evidenced by the unedited note above, ability to have brief meaningful conversations with friends and family and take on day to day tasks.  She is being very intentional and focused with her rehab which includes pushing herself a little further everyday in speech, exercise, cognition and occupational tasks.  All still very slow (the note above took 90 minutes) and tiring.

We had good conversations with her doctors in NYC and here in Cincinnati, and have a good and encouraging path forward.  We are ready for the next plot twist but looking forward to a peaceful and predictable season for a couple months.  We are also hopeful we are on a path that is closer to 3 years of good quality of life vs. 3 months which is already behind us.

Worship:

When all this started one of the things I heard was to cover Maura in worship, that it would be an integral part of this journey.  We have done this live, via CDs and YouTube playlists.  She has been so blessed by this and I have learned a great deal.  More on this another time but I wanted to share this one story.  Last Saturday before we headed to NYC we had some old friends over for worship, to celebrate Maura’s recovery and seek the Lord for guidance the upcoming week.  There was a huge storm that evening and as we worshiped our basement flooded.

Just like the battle with cancer, we started worshiping as the storm began.  Damage was done but we worshiped through & the Lord provided through our community - already there to deal with the flood.  He is our provision in the storm.  Another thing that struck us about this, just like the flood is forcing us to clean out our house, discard things we don’t need and weigh us down, the Lord is leading us to get rid of, prune things in our life that encumber us for the journey ahead. 

“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, 2 fixing our eyes on Jesus, the pioneer and perfecter of faith.” Hebrews 12:1-2a

Clinical:

I’ve had a lot of questions here and I’ll lead with a primer to simplify something rather complex.

Her tumor consists of a variety of different cells w/ different characteristics (markers, growth rates, …).  Different treatments have different efficacy against these different cells types (i.e. rapidly splitting are more susceptible to radiation).  So when the tumor becomes resistant to a treatment it may mean that most of the cells which are susceptible to that line of treatment have died off and what remains is less susceptible or not practicable reachable by the treatment. So the game is to continue a series of treatments (surgery, radiation, chemo, immuno, … therapies) to get more and more of the tumor.  Unfortunately this tumor always comes back unless there is a miracle/new medical breakthrough.

The good news is:

1) The radiation appears to have been very effective on at least 2 of the 3 tumors

2) The immunotherapy (Nivolumab, or Nivo for short) is likely having an impact on the tumors as well

3) The swelling went down a lot.  You can see from the attached file how much her swelling went down between Aug 24^th at the ER and this past week. Still some swelling but much improved.

4) We learned a lot and confirmed much of what we already believed.

5) The path forward is clear.

The not great news is the 3^rd tumor looked odd. It could be pseudo-progression and no big deal or she may need another round of radiation if it is tumor growth.  I suspect surgery is also an option.  The other obvious not great news is that Maura does not tolerate the Nivo very well.

The edema, or swelling, Maura experienced which landed her in the ER was due to a) radiation initially w/o steroids and b) the Nivo which turns parts of her immune system “up to 11” to go fight the tumor.  Since the swelling increased after the radiation it is believe the Nivo is the primary source.  We also learned a reasonable percentage of people in the trial had similar swelling and part of the trial is to learn how to administer these treatments safely.

                                                                                                                        

Now Maura’s tumors grew very fast between surgery and the start of treatment 2 weeks later.  Therefore one would expect the radiation would be effective and it appears to have been.  So hopefully the fast growing cells have been dealt with and we are dealing with slower growing cell types.  Given Maura’s tumor’s genetic markers the standard chemo is expected to have little impact which is why the immunotherapy is so important.  Given her inflammatory response it is believed the Nivo is having effect on a population of tumor cells.  In other cancers (i.e. lung) it is believed Nivo is mostly effective against cells that express the PD-L1 protein.  Different people’s tumors have varying % of tumor cells with this protein.  If this is the case our hope is that her tumor’s PD-L1 expression is high and hence the Nivo can kill a large population of cells.  As this population of cells is reduced the inflammatory response should go down.

So they decided to let her brain rest for 2 more weeks and then start the Nivo again.  We are still waiting for a decision as to what to do with the 3^rd tumor.  Once the swelling and related symptoms come back, which they expect will, they want Maura to stay in NYC to manage her symptoms.  This is probably 6 weeks out.  They also believe the flying is exasperating the symptoms.

That is it for now, until next time and thanks again for all your love, prayers and support.

With Much Love, Terry & Maura

From: Timko, Terry M
Sent: Friday, September 02, 2016 12:01 PM
Subject: Maura Update - Sept 2nd - Home from the Hospital

Friends and Family,

Sorry to send another email so soon, but many of you have been asking how Maura was doing after the last email (below) so I wanted to share the good news.  Maura’s neurological symptoms have been improving day over day and after a week in the hospital they let her come home.  Sunday she could not walk unassisted and on Tuesday she did stairs w/ supervision.  So a ton of improvement and our prayer is that this continues to the point where she is back to where she was post-surgery, which would mean no permanent brain injury from this or previous treatment related incidents or tumor growth.  She is already doing better than they led me to believe she would ever do.  So huge answer to prayer.

It is really good to have her home.  She is still on high dose steroids and is getting lots of neurological rest, seeing the doctor today and starting outpatient PT and speech therapy.  She did not require the other drug which I mentioned last time.  We will make the call as to how to proceed with the cancer fight in about 10 days.

She is not up for many visitors because she needs her rest and those that we do visit need to make it short.  If you want to visit please email me and I’ll do the best I can to work folks in over the next week or 2.

I’ll still be sending out the more thoughtful post when I get time.  Thank you everyone for all your above and beyond support and continued prayers.

Terry Timko

From: Timko, Terry M
Sent: Saturday, August 27, 2016 6:15 PM
Subject: Maura Update - Sunday August 28th

Friends,

It has been an eventful 3 weeks since the last update.  I was planning a thoughtful and encouraging post about what we have learned and seen on this journey, but the events of the past week intervened.

We had quite a bit of drama this week.  For the past month we have been in a wrestling match with swelling in Maura’s brain, trying to manage the resulting symptoms to a safe and tolerable level.  To paraphrase one of her doctors before we started the treatment “There is going to be a battle going on in your brain between the tumors and the treatment. This is going to lead to edema, or swelling, in your brain”.  We lost the latest round of the wrestling match.

Maura ended up in the ER Wednesday and is now in the Neuro-ICU. From the CT and MRI we could see that the swelling was greater than our last trip to the ER deflecting the centerline of her brain 8mm and the pressure causing her brain to prolapse at the base.  A dangerous level of swelling.  Dangerous from the standpoint of life threatening and brain damage.  They treated her with high dose steroids alongside diuretics, hypertonic IV solution (to raise her sodium level) and stopped fluid intake to dry her out.  She is in the Neuro ICU. Her condition is no longer life threatening but her cognition, speech, memory and mobility have be impacted.

She responded well to treatment Wed to Thurs: her headache went away, her speech cognition and mobility improved ~60% (it was very bad), her long term memory a little better but short term memory did not improve.  Friday her speech and cognition worsened, mobility improved a bit and memory was about the same.  Today all of her symptoms improved but her cognition has got to the level that she is aware of her predicament and a bit scared and sad.

{I had forgotten much about this hospital stay and how out of it Maura was until re-reading this after she died.  I was really scared that this was how she was going to have to live out the rest of her days.  I am so thankful she recovered and we all got the pleasure of her company in the months that followed, I also remember fondly her cousins Ed and Maryellen visiting at the back end of this stay}

They are going to continue to treat her swelling aggressively over the weekend and monitor her symptoms.  There is another longer acting drug which they can use and we will make that decision Monday.  There are several reasons we don’t want to use this other drug from a side effect and future cancer treatment perspective.

Right now we don’t know if there was any permanent brain injury from this incident or if she will return to normal once the swelling goes down and her brain has a chance to heal – this can take a while – not exactly like a bad concussion but not a bad way for you to think about it.  There is a potential that all her symptoms are due to the swelling and once that is addressed and she is off the immunotherapy (the primary reason for the swelling) her symptoms will go away and she will be back to where she was 8 weeks ago – which is nearly normal.

On the bright side there is a strong correlation between swelling from the immunotherapy and the effectiveness of it against the cancer.  So she has already had more cancer fighting than the standard treatment of radiation and chemo which we competed 18 days ago.  We are stopping the immunotherapy for now and will re assess in a couple weeks – they may allow us to continue at a lower dose and/or with steroids outside of the clinical trial.  Steroids blunt the effect of the immunotherapy.

That said the immediate concern is brain injury.  So this is where I would ask that you pray.  I’ll hold off on the rest of the story as I want to get back to her.  God is still good.

Just a couple of housekeeping issues:

If you are forwarding this to folks or you have had these updates forwarded to you please email me your name and contact info and I’ll add you to one of the distribution list.  We would like to know who were are communicating with.  Thanks.

Josh & Ethan have gone back to school (University of Cincinnati as HS Junior & Seniors – Mom and Dad so proud) and activities are already ramping up.  They are doing very well commuting by bike and bus but still have a lot of driving needs which are not practical or served by public transportation in Cincinnati.  I thought I could cover this as I am back in town but have been otherwise distracted.  If you are local and can pick up some trips or would like to make a contribution to their “Uber fund”, they would greatly appreciate it.  Contact Jeff Holland (cced) if you are interested.  He has an web site where you can sign up.  One of the hardest is Blue Ash to Anderson midafternoon 2 to 4 days a week.  For those of you that have already driven them thank you so much.  We feel it is really important that they stay plugged into their activities in this season as this is their community and support system.

p.s. The boys would also love some gift cards for food because they are now out of the house a lot (skyline, chipotle, BW3, Subway, fusion, larosas, …)

Terry Timko

From: Timko, Terry M
Sent: Monday, August 08, 2016 7:35 PM
Subject: Maura Update - One Day More!

It has been another 3 weeks and this living and working in NYC chapter is coming to a close.  It has been amazing, but in the end wore us out and we are looking forward to heading home very soon, starting the next chapter of our journey closer to our friends and family.  Thank you again for all your prayers and support - we are truly blessed by our community.

Short Version:

Today is Maura’s last chemo and Tomorrow at 7AM is her last radiation treatment.  Then hopefully home to CVG around 1PM if Delta fixes their systems and we get everything wrapped up here.  We will be back in NYC for immunotherapy next week and then every other week thereafter.

We had a rough 2 weeks as the treatments have taken a toll on Maura’s brain, with tons of intracranial swelling which landed her in the ER.  We are still doing really well but know the reality of what we are facing – I think the ER visit was a glimpse of what disease progression will look like.  We won’t know the efficacy of any of this, beyond improvement or progression of her symptoms (which are amplified the treatments), until her 1^st follow-up MRI now scheduled for the 13^th of September.  We are both really tiered and worn out but a lot better than a week ago when her MRI was scary.  They have effectively “managed” her symptoms vs abating them with steroids.

Long version:

Maura and I are getting progressively tiered for different reasons and are really looking forward to being home with our boys, resting, recovering and getting caught up.

As they predicted the treatments took their toll on Maura and we ended up in the ER last Monday.  We were very concerned it was disease progression but it turned out to be A LOT of swelling in her brain due to the radiation and hopefully the Immunotherapy.  They normally give steroids with radiation treatment to reduce the inflammation side effects.  However, the immunotherapy should also cause inflammation as it triggers the immune system to attack the tumors and treating the inflammation steroids blunt immune system and the immunotherapy’s effectiveness.  So while they could resolve the symptoms in 72hrs w/ steroids they are only reducing them enough so that it is manageable and safe.

2 weeks ago Josh had his turn visiting him mom in NYC.  They created some great memories and had some good times eating, touring central park by pedicab and catching a Radiohead concert a block away at Madison Square Garden.  Josh, like Ethan 2 weeks before, got to free-range in NYC a ton and meet up with online friends.  I think this was great for both of them.

We are grateful for the 1^st 2-3 weeks symptom free in NYC as I believe they gave us the strength to get through the back ½ of this treatment.

I was talking to our oldest son Daniel over the weekend about his perspective on this journey and how his mom and I were handling it.  He thought we were being overly optimistic, and was worried we were not prepared for what was to come.  There may be a bit of truth in that, especially looking form the outside in, but I tend to write these missives while on peeks vs valleys.  I do think we have a realistic view.  Its ok to be scared, sad, confused, … but you can’t live there – there is no profit in it and we have a God and Father who loves us.  We don’t always get to see the bigger picture and all the redemptive work that is going on all around us.

I know my eyes have been opened in many ways.  My perspective and vision has changed.  I see people struggling, less blessed than us, in relationships fighting, … and have such empathy now.  To some degree I was fat, dumb and happy (that’s a Carlos-ism) striving for my goals.  We are super blessed with a an amazing relationship, wonderful children and a great community.  At the same time I have to confess, the less time I have to pray, worship and generally connect with God the harder this is, the poorer my mood and shorter my patience.  I’ve been getting less time as the weeks go on and the load goes up.  Still not sure what to do about this.

I know everyone on this distribution has a different perspective and is being impacted by our journey in their own way.  I hope walking this out with us is in some way redemptive for you.  Just like I have been intentionally seeking out people who have battled cancer, investing time there, I hope to process through this with many of you over the coming months.  Please email, txt or call me directly if you want to meet, talk, have something to share or just hang out.

Logistics:

It is going to be great to be home where our support system is.  I expect Maura to be slow physically and mentally for the next 2 to 3 weeks so we will still limit visitors.  Please contact me directly if you want to visit and I’ll schedule something that fits her nap schedule.   Maura is still not doing email, phone or social media yet.  Visits need to be limited to ~30 minutes.

Daniel heads back to Rochester Institute of technology next Wednesday.  As many of you know Maura homeschooled our boys and our solution this year, instead of sending them to public school for Josh’s Senior and Ethan’s Junior year, is enrolling them at the University of Cincinnati (Blue Ash) for both high school and college credit, plus some classes at Leaves of Learning homeschool coop.  They start August 22^nd .  Ethan’s swimming is ramping up and we will be picking the care of Maura’s mom back up at the beginning of September – we have hired eldercare through August.

I hope Ethan will be driving by the end of September and Josh by the end of October.  Since Maura can’t drive and I’m working, they are going to get familiar with the bus and may need to rely on our community and Uber for rides to make it all work out. 

I’m sharing all of this because I know we will be terribly busy and probably a bit over whelmed the next month or so.  Remember when I said this was a marathon and not a sprint?  I have to admit this is a bigger journey than I thought when we started.  There are just so many things you don’t know to expect draining time, energy and resources.  So now is the time where we probably will need your help the most (meals, driving, staying with Maura when I can’t, checking on her mom, …) and I need to swallow my pride and ask for help.  I’ll be working with Janet and Jeff (plus his understudy Arnaldo J) on our physical needs.  Maura will have diet limitations. We want to manage things so as not to overwhelm anyone and to even things out overtime until we get settled into the new normal.  Stay tuned especially if you are local (we’ll send a separate email).

OK I’ve managed to ramble on enough again.  Be blessed.

With even more love and grace, Terry & Maura

From: Timko, Terry M
Sent: Tuesday, July 19, 2016 2:09 PM
Subject: Maura Update - ridiculousness & 1/2 way point of initial treatment! - Tuesday July 19th

Dear Friends and Family,

Sorry it has been 3 weeks since the last update and for the length of this one.  Writing these is getting harder, but cathartic as well.   I hope you don’t mind how this one rambles on, in addition to keeping you all updated, I think I’m using these as a way to process out loud and capture the steps in our journey.

Before I get started I wanted to personally thank all of you who are supporting us in so many ways: through prayer and worship, driving and meals, parenting our children in our absence, valuable clinical input and guidance, wise counsel encouragement and insight, generous financial gifts, thoughtful cancer research, car buying help for the boys, finding a place for us to stay in NYC and Daniel in Rochester, getting me out of the house for an hour or 2, … the list goes on.  We are blown away. You are Amazing!

Ok so this chapter is a flurry of activity starting with the amazing and ridiculous, progressing to just shear busyness and if I’m honest losing of sight of the big picture a bit in all the dust that is being kicked up. There is so much to do and time is so short.  “I feel thin... stretched. Like butter scraped over too much bread.”  We are both getting tiered, her from radiation and disease fighting and me from juggling and playing catch up.

As the subject hints at today she has her 15th of 30 doses of radiation and we are still doing really well mentally, emotionally, spiritually and relationally.  But I must say I am becoming numb and things are starting to blur.  This is something I need to deal with to best support her.

The doctors say she is tolerating her treatments (radiation, chemo & immunotherapy) really well.  She has headaches, some dizziness and is very tiered (like should have 2-3 naps a day tiered). She has lost her hair and we are in the market for cute hats :).  Her speech is still labored but improving, I suspect she is rerouting those neural pathways which is how this happens, but her cognition continues to deteriorate – especially when needing sleep.  All this is expected with the treatments and sleep helps her brain heal from the radiation.

As I’ve said previously we won’t know the efficacy of the treatment until the 18^th of August with her next MRI which comes after she stops chemo and radiation.  This is because effective treatment response will cause inflammation in the brain which mimics tumor growth on an MRI (called pseudoprogression).  If the standard treatments (chemo & radiation) are effective we should expect her symptoms to abate some within a couple weeks after the treatments end.  The clinical trial treatment (immunotherapy) will continue indefinably every 2 weeks in NYC and hopefully keep the tumors at bay, but also may cause inflammation and other adverse autoimmune responses. If the disease progresses we will find the next tool to fight it with.  There is an amazing amount of research in this area – truly stunning.

Logistics:

We got into the American Cancer Society Hope Lodge (132 W 32nd St, New York, NY 10001).  I believe one of you put in a good word for us (you know who you are) because we were told there was no way we would get in initially.  This is huge because it is designed for cancer patients and we will only have 4 weeks of NYC hotels vs. 8.  Ethan spent the week with his mom & I last week and Josh will spend the week with us next week.  We are trying to let them have some quality time with mom, make memories and process through this with us 1on1 since we are essentially not home for 8 weeks.  Ethan did spend a bit of his mom’s nap time chasing Pokémon via Citi Bike.  I’m working from the NYC HP office Tue-Thur, which is nice.

I’m actually in Cincinnati this week taking care of things we have neglected for a couple of months and Maura’s friend Ginger, who is a nurse, is with her in NYC.

A couple of Maura’s relatives have visited Maura’s mom Lois who we care for and is now in assisted living.  This was greatly appreciated, as Maura is more worried about her boys and her mom than she is about herself.  So any Mulanes or Harbottles who want to do a trip to Cincinnati to visit aunt Lois and see Maura you are more than welcome.

While visits from friends when we are home can be life giving, they can also be very draining on Maura.  Please work with me if you want to see Maura.  I’m trying to let 3 or 4 new people visit briefly on weekends she is home.  This coming weekend is already full.

I expect we will have driving needs for Ethan next week but do not need any meals for the next 2 weeks. The boys are still working off what is in the freezer.  Please continue to see the web site (https://my.lotsahelpinghands.com/community/timko-love) or contact Janet and Jeff if you want to help out(Arnaldo is filling in for Jeff while he is on vacation).  All 3 are cced.  The boys really appreciated the gift cards.  If you dropped off a meal, your container is likely in the bags in our foyer.  Feel free to stop by, let yourself in and pick up your containers.

The last logistical item is Maura has declared email bankruptcy on her Hotmail account w/ 1000s of unread messages.  We have set up a new gmail {contact info deleted} account for her which she is now getting on her phone.  Feel free to email her (ccing me) if you want to send her a message.  She is not much into responding yet but is doing a little bit of email from NYC.  She does not have her computer w/ her.

On to the ridiculousness:

We are doing better emotionally, spiritually and relationally than we were before this started.  We are closer to our God and our faith in, and understanding of, Him has deepened.  Our prayer is really that this would continue, as what could be better than that?  It is hard with all the busyness.  Maura and I are also closer and more in sync too, if that is possible.

The 1^st 2 weeks in NYC while Maura was relatively asymptomatic were an amazing time for us as a couple.  Not only did we get to explore one of the most amazing cities in the world, we got a 2 weeks together which has not happen in nearly 25 years of marriage.  We kayaked on the Hudson (yea that’s a thing)…

… got to know our new neighborhood and learn to live like New Yorkers.  We walked the High Line, checked out the Met and ate really well.  We also talked about life, death, suffering, the future, our children, work, God, money and our community.  We looked at our lives and found few if an real regrets (one was that we never lived in NYC before we had kids. Ha!).  I definitely have a different view of our retirement savings and plan to treasure every moment we have.  I know if God does not heal her here in this life we will all miss her terribly. 

I have had some amazing conversations with our extended community, from several who have lost loved ones to glioblastoma, to old college friends, to our boys and closest friends.  Nothing like life and death to chase away trivialities and make time to get the meat of life in our conversations and relationships.  We pray this also continues.

This season is both affirming our life choices and perspective while at the same time transforming them.  The reality is we still don’t know if Maura has 3 months or 3 years and we don’t know the quality of that life or what it will require of us.   I’ve spoken to people whose loved ones were disease free, with a clean MRI, who died a month later.  This reality makes you look at your time, habits, relationships, surroundings and money through a different set of lenses.  I know Maura & I lived intentional lives before, but I feel like blinders have been removed and we are now seeing these things, life, as it really is.  We are learning a lot from this and looking forward to sharing with you all as we can.  We are also really looking forward to starting that couples group we spoke of to many of you in a few months.

That is about it for this installment.  I hope to get the next one out in a week or two, not three, be a bit shorter and share in a little more depth what we are taking away from this experience.

                                                                                                                                           

With Much Love, Terry & Maura