Sunday, November 23, 2014

Catching Up This Blog to the Present...Almost.

Okay, so this is not an OFFICIAL blog post update.  What I'm doing here is sharing the updates I had posted on our fundraising site since the SPOCK post.  I just don't want to lose the continuity in my own family blog since I'd focused on the YouCaring site for updates the last couple of months.  I will be refocusing all my future efforts in blogging back to THIS blog...starting NOW!  :-)

The only update I have is this:  THE SECOND MONTH IS HARDER THAN THE FIRST.  More on grief, life, hope, love, family, faith, etc as soon as I'm able to muster up a blog post!


Posted on 10/27/2014 by Organizer Heidi Owen & Melissa Abel
For anyone who does not know, my husband, Mark, passed away on October 8th, 2 and a half weeks ago...seems like yesterday and like an eternity.  We had a beautiful memorial on October 17th, which unfortunately was also my son's 12th birthday, and then we had a private graveside service with military honors on the 18th.  It was all very beautiful and very honoring of Mark's life.  But now, all of that is over and all the family has returned to their own homes.  My Mom had been here for over a month, helping us.  I don't know what I would have done without her.  I was able to be with Mark as much as possible and for the last two days and nights of his life.  The day before he died he said to me, "I'm leaving.  You need to let me go." Hardest words EVER.  I was alone with him for the last few hours of his life and his last breaths.  I was with him when his spirit departed and he joined Jesus in heaven.  It was the hardest thing I've ever done and maybe the bravest as well.  I prayed over him, read scripture to him, released him in LOVE and told him what an amazing father and husband and MAN he'd been.  I promised him I'd be brave and that we'd be okay. I'm really trying.  I'm not gonna lie...this is hard.  As the reality sets in that he's never coming back...never walking through the door again, never driving up in his little truck after work again, all those things that our life revolved around...never to be again.  I have to walk through this and help my children walk through this.  It's a lonely path. I'm still journaling regularly.  I'm asking the Lord for help throughout the day OFTEN.  I feel a little (or a lot) lost.  Just be praying that the Lord will guide us on our new path because I don't know what to do.  I'm just trusting that He has a plan.

Here's the obituary link:!/Obituary

Please pray for our health here.  Avi had to go to the doctor yesterday AM for fever and tissue swelling around her rt eye.  It was like a golfball was in there. She's on antibiotics for cellulitis but it's not looking significantly better today and her fever was up.  SO...PRAYERS definitely appreciated on that front as well.

That is all I can muster for an update for now.

THANK YOU ALL for the love, prayers, & support you've provided for us during this tragic time in our lives.  It really has made a huge difference.  We are very very thankful and words are not adequate to express how much!  I hope to be able to send thank you cards to each one who has supported us in any way.  I'll work on that soon.  Gratefulness and expressing it should be a very healing thing for me to be working on in the months to come.  I just need to keep focusing on all the blessings in our lives...there are MANY!

Posted on 10/07/2014 by Organizer Heidi Owen & Melissa Abel
Kimberly here again...writing from Hospice House as I sit beside Mark...

'Twas a peaceful night in the HH with Mark.  Yesterday I got a call that he was in decline.  And he was/is.  BUT, his his bladder was not draining into the cath despite several attempts at flushing and installing new ones.  He was very uncomfortable yesterday regarding this, obviously, when he was awake he'd say he had to go pee...but of course it wasn't happening.  I prayed and I know scores of my friends & family were praying and low and behold, after a whole day with no output it started flowing sometime after 8pm when I'd gone home to get my night gear for sleeping over.

Yesterday was was one of the most difficult days because when the nurse called me and said he was in decline I rushed up here.  I was unprepared for his condition of extreme discomfort & apnea that lasted so long that I would hold my own breath until he started breathing again.  The RN said it could be very soon or go on a few days before the end...obviously no one can predict our last moments.  I decided to have the kids come up and say their goodbyes and offer their loves one last time, just in case.  This was the hardest part of all.  Our sweet children having to say goodbye to their papa bear!

They were here about an hour then my Mom came and got them.  I'm so grateful she's here.  I wouldn't trust their spiritual and emotional needs at this time with anyone else.  I can't imagine doing this without her here.  Thank you Mama!

Please continue to pray for comfort and peace!  I pray that this part will not be prolonged & that Jesus will take him home soon.  If he isn't to be healed and home with his family I want him healed & home in heaven!
**********     **********    **********
Doctor JUST left after his morning visit.  Said Mark has had some big changes in the last couple days but said there's no predicting any of this. He may continue to quickly decline or he may bounce back and yo yo for a while.  No way to know.  So I'll stay by his side as much as possible and be here for him so he's not alone.

And that's where we are at today.

Posted on 09/26/2014 by Organizer Heidi Owen & Melissa Abel
Kimberly here.

It's been an extremely emotional week (...or year).  Mark is still in Hospice House, where they are taking really good care of him.  There was some concern (& drama) that I'd have to move him after the 5 days but the doctor changed his status and is allowing him stay there until he's stabilized or until he goes to be with Jesus.  It was pretty stressful for a couple of days...trying to find placement for a guy that's his age and in the condition he's in.  The doctor assured me today that I don't need to worry at this point about moving him elsewhere. It was such a relief to me to hear that from him.  The Hospice House is such a lovely place and the staff are incredible.  If he can't be at HOME, then this is the best place for him.  He definitely needs the care he's receiving there.

They are still working on getting his pain managed.  Mark has been having some delusional thoughts and I chalked it up to the drugs but asked the doctor about that this morning and the doctor suggested that some of what he's going through, mentally, is disease progression most likely and not just the medications.  He said it's common in metastatic cancer patients.  To be honest, some times he says some pretty funny things.  And he KNOWS they're bizarre things to say.  The other day we went in and he was totally lucid and it was such a GIFT for Azriel and I to spend time with the man we know and love.  He was able to appreciate an arduino project gift that Azriel had made for him and that meant so much to Az.  It was wonderful.

I'll write more later.  Heading up there with Liberty.  He likes to see the kids one at a time.  Yesterday he didn't want any visits so he could sleep the day away.

Until next time...

Posted on 09/19/2014 by Organizer Heidi Owen & Melissa Abel
Kimberly here.  A way overdo update:

So much has been happening that I have not had time to update properly but even if I had...I would have had to do it daily to keep all up to speed and I haven't the spare energy for that.

Mark is now in HOSPICE HOUSE for 5 nights.  We signed up for hospice a little over a week ago and with that came a lot of relief that we would have someone to call when/if we needed to.  However, Mark seemed to go downhill very quickly and yesterday he hurt his back.  He's had a hospital bed and a walker.  Yesterday I helped him get his first bath in 5 days...but later on in the morning when he was repositioning in the hospital bed he hurt his back.  After that he couldn't move at all...even to get comfortable because the pain was too great.  That's saying a lot considering all the pain medications that he is on.

Anyhow, he requested yesterday that he be moved into a full care facility for now and it was a grueling and emotional day for ALL of us.  So many things to figure out and so much to do.  It's downright overwhelming and there is no option to say that you just don't feel like dealing with this today. I would love for all of us to have a break but this breaks for no one.  UGH!

Last night I prayed and asked the Lord for a miracle...that a bed at the hospice house would open up so we'd have time to make decisions without haste.  There, apparently, is a large waiting list for respite care from Hospice House but they called me first thing this morning and told me that they had an open bed for Mark if we wanted it.  
PRAYER ANSWERED!!!  Mark was so relieved.  So am I.  It's hard not having him here at home.  It's especially hard on the children.  Even though he's been sick in bed for so long, he was home.  And that lended some normalcy to our lives...Papa was IN THE HOUSE. Now he's not.  :-(

It was especially hard for the kids when the ambulance came and took him out on a stretcher.

Mark seems very comfortable there.  He is getting the support he needs since they have the equipment and staff to meet those needs.

Hard times.  Prayerful times.  Sleepless times.  Crying times.  Hoping times.  Loving times.  ONE STEP at a TIME times.

We are trying to keep GOD at the center of this storm.  He is our hope.  He is our ANCHOR.

More when I have time.  

Posted on 09/06/2014 by Organizer Heidi Owen & Melissa Abel
Kimberly here...
Here's where we are at:
After meeting with Mark's oncology ARNP last week by MYSELF (Mark was too much in pain to tolerate the drive to the appt.), we got a referral to hospice.  It was funny because when I showed up at his appointment FOR him, they didn't quite know what to do with me.  I don't think that happens often.  BUT I had pretty well had it with the lack of care and response we've gotten from our medical community.  I'm not dogging on the individual providers, as they are all quite lovely people, but there is a TOTAL FAIL in their system when it comes to responsiveness and Mark has fallen through the cracks over and over again...calling for help with his pain management and never getting anywhere.  So, I went in and I tried to get through the appointment without breaking down, but I couldn't make it.  I the office.  I was just so frustrated and I have felt that we've been really just left out here on our own without any support or network of how to deal with the things that have come up, like the pain.  When we have gone to the ER because we couldn't get help from the doctors or it was a weekend, they didn't know what to do with him.  They really don't want to touch him with a 10 foot pole, or so it seems. 
So we'd gotten a primary care physician who is a personal friend and colleague of our oncologist, and wonderfully just down the street from us. HOWEVER, he doesn't return calls.  He's a nice guy, we like him, but he does not return calls. 
 Blah blah blah.  I'm going in circles here.  The point is, we've felt that we haven't had the responsiveness that we need from our medical team.  I don't feel they are even a team.  It's all segmented. 
This post wasn't meant to be a complaining post.  I'm sorry.  The point was that I went in and requested a referral for hospice care.  She agreed that that was a good path for us at this time since Mark decided against any more treatments.  Not that they had anything with any hope to offer.  They didn't. 
The intake nurse from hospice came out to our home the next day.  We are very much ready to get the kind of care they offer and their care goals are what we have been desiring for the last month.  However, once you join hospice you cannot do any diagnostic testing at all. 
We decided to not sign immediately, as Mark had a couple diagnostic tests he was still considering.  One is the nerve conduction test and the other a CT scan of his shoulder that his radiologist suggested.  He said there is a SMALL possibility that his arm pain could be caused by a tumor that was growing on the mass of nerves that are in the shoulder area.  IF that is the case, he could do some radiation on it and it would relieve the area possibly of pain.  So, he's considering that because if he could get rid of the pain without DRUGS he'd rather do that.  Of course!  Who wouldn't, right? 
The nerve conduction test would be done through his neurologist.  The referral for that went in over a week ago and no calls for an appointment.  Mark spent much time on hold calling them yesterday and finally left a message.  A human eventually called and said they couldn't fit him in until NOVEMBER.  Seriously?  Is there no consideration to put a terminal patient at the front of the line????????  This is the type of thing that is KILLING me about our medical system.  It's unfathomable to me that they can't put him in front of some other TODAY.  He explained his situation and prognosis and NO DICE!  They aren't going to see him earlier than November. 
We also don't have an appt for the CT yet...after he called them yesterday.  Can these places all be that busy that they can't fit a guy in who needs the diagnostics like YESTERDAY??? 
UGH.  It's more than I can bear to even think about the idiocy of it all.  Total fail of the system in my eyes.

Anyhow, Mark decided that the nerve conduction in November isn't worth waiting on.  He does want to get the CT, so we'll do that and see what they can find in there, if anything.  The radiologist did an exam and thought he'd be able to feel a tumor there if there was one and he did say this CT is a shot in the dark...a small chance.  But, we'll take it.  THEN we'll go on hospice care.
After his appointment with the radiologist on Thursday we went to his primary care doctor's office.  The radiologist would not change his pain medications.  That was one of our goals while we were there.  The hospice nurse wrote down her suggestions for what he should be on but the radiologist didn't feel comfortable putting his name on a prescription for that.  I suppose that's understandable since pain management is not his area of expertise. 
Mark's primary was not in but we got in to see his partner.  She was wonderful.  She gave us exactly what we runaround, nothing.  First time in a while I've felt like someone treated this situation in the proper manner.  I got the prescription filled for MS Contin (Morphine) and for the first time in a month, Mark is comfortable and has been able to sleep.  He still feels the pain but it's not all consuming like before.  It is such a blessing that he can get some really restful and deep sleep. 
End of our saga for this update today.  Thank you for letting me share my frustrations with you all.  I just wish there was a system in place here for continuity of care and case management for situations like ours.  

Sunday, August 31, 2014

Symphonies, Spock, Freedom, & Jesus

People ask me all the time how I’m doing and I really want to just grasp the sides of their heads and do a Spock mind meld with them because there are just NO WORDS.  Often what comes out is, “We’re doing okay.”  …”We’re taking each day is it comes.” …”Living each day in, and by, the grace of God.”  And while the 2nd two are true the first is generally an untruth, a pleasantry… it’s the lie some people like to hear when they ask.  It’s the thing I say to avoid getting emotional.  I truly want people to continue to ask and to be okay with whatever my answer is…even if it’s the lie because sometimes I can’t risk the emotions of it all.  It’s too much.  We are OKAY… in the grand scheme of things.  God’s got this.  He has US. 

At night, in the dark, alone in my head I write beautiful things.  Well, I write beautifully, anyway.  I want so much to be able to share some of my journey, to open a window to my soul so you can take a glimpse and know me a little.  However, when I sit down to write on paper it is not the flowing text I imagine in the night.  It’s not in an order that creates the story I want to tell.  It’s a shallow version of what I want to convey.  It misses the mark EVERY time.  In my head it’s like a symphony ~ the words evoke feeling and emotion, they are round and full, the sentences flow as if to music and each paragraph perfectly flows into the next, building the story, getting louder, stronger, deeper…enveloping the reader in the fullness of my heart and soul.

If only I could write the way I write in my head.

I was thinking last night about how convenient (and scary) the Spock mind meld would be.  It’s what I long to be able to do so you can feel what I feel or at least understand me a little better, my heart, my motivation, my reasons for the things I do or don’t do…those things that cannot be conveyed through words and writing.  The spoken and written language is not enough.  It’s just not enough.

The other day I was out running an errand and ran into a woman who knows me from MOPS, one of the mentor moms.  I knew her face and that of her friend, they were familiar but out of context for me because I’d only ever seen them at MOPS and had not had any real interaction with them, just the polite pleasantries in passing.  They knew me.  They knew our story.  They had been praying for us.  She stopped me, reminded me of her name and where I knew her from.  She asked if she could hug me and I said, “Yes, of course” and she embraced me in a warm hug.  She said she was praying for us and I thanked her and we went our separate ways.  I got in my car and was flooded with emotions and tears, and sadness.  I know it seems weird that I go about my days not thinking about how sad our situation really is.  It would just be soul wrecking to think about it or dwell on it.  I would be a mess all the time.  Instead I go about life, day by day, grateful for each one and just powering through.  I can’t remember what “normal” was like, what having a husband who gets up and goes to work each day feels like, what playing in the park and going on drives just for the sake of new scenery feels like…it’s all in a world long gone from my present reality.  So yeah, I just get through one day at a time, pushing the pain & reality of our situation to the back corner of my mind

A couple of days ago I saw an old couple walking into the store, holding hands.  I wanted to cry for what I wouldn’t likely have with my husband. All those times we talked about growing old together, watching our children grow up, get married, have babies…being old fuddy duddies together.  All those future dreams and hopes that cancer seems to have taken away.

I mourn the loss of those dreams, that future we thought we’d have together.

It hurts to see happy old couples.  I envy them.  I know they have their own stories and some more painful than mine, but on the surface I wish for a future that looks like them. 

This is lonely territory.

When I’m confronted by someone who brings our reality up by asking how I’m doing, it rushes in and floods.  I don’t know how to live in any other way, how to cope.  I am appreciative of these brave people who love me with words, a hug, letting me know they are praying.  I am deeply grateful to them because sometimes I feel numb to the emotional side of this and they make it raw and real for me again.  They get me connected again to feeling, and that’s a GOOD thing.  I feel less lonely when I’m feeling. It’s always surprising, always hard, but always good.  I need to feel because when I’m in touch with my emotions it brings me back to God, to my need for Him every moment.  He sustains me.  He loves and cares for me and He often shows His love through the people I run into unexpectedly.  I’m never truly prepared for these encounters.  Even though they are hard, I welcome them.

My husband used to fill his free time working for FREEDOM, the 2nd Amendment, militia, prepping for possible future disaster and societal breakdown, committees of safety.  He was passionate about those things, he was good at it. 

Who knew that we didn’t need to fear guns, violence, societal breakdown, losing freedoms. Our battle was going to be much more personal, much closer to home.  It was going to be IN our home and no amount of prepping, guns or gear, food storage, water supply, militia or committees would be able to help us or could protect us. 

No, they are all useless in the face of stage 4 cancer.  You can’t “PREP” for this.  You can’t really defend yourself against this.  There is no committee that can rally around and figure a way out of this.  No militia or army that can combat this and save us from this.

Who knew that the freedom we’d be fighting for was of a totally different kind, one few win, one with inadequate weapons to fight back with (not discounting our mightiest weapon, PRAYER).

And all this always comes back to God, to JESUS and our dependence on Him, knowing that there is a hope beyond this life.  There is a battle continually being fought in the spiritual realm (thank you for your prayers!!!).  It’s a battle for our hearts and souls, OUR MIND, WILL, and EMOTIONS.

God sustains me.  I am brought back again and again to dependency as if I were a suckling infant.  I guess I am.  I am THAT dependent on the love and nurturing of my Lord and Savior.  I depend on Him to get through each day.  My hope is in my future with Him.  I may not get my earthly hopes and desires but I know where my eternity and true treasure lies.  I know I’ll be one day reunited with those I’ve said good-bye to. 

I can honestly say I’m looking forward to heaven.  That seemed a scary thing somehow, not so long ago.  We cling to this earthly life we know, but there is something more solid and eternal to cling to…a hope that will not let us down, a love that will not fail.

I struggle and strive; I can’t make sense of any of this… this suffering and pain, the grieving and loss.  It always brings me back to Jesus.  And that's a good place to come back to.

I wish I could open that window to my soul so you could truly see all I’m trying to convey…so you could hear the fullness of the symphony that the words of my heart sing.  To know the hope I have.  

Jeremiah 29:11  For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.



When, and if, you say your prayers, please pray for my husband, Mark.  Ask God to relieve his relentless pain.  Always ask for total healing but pain relief would be enough of a miracle to start with.  I’d be so grateful and full of joy to see him not suffering, to have him back!  A person suffering serious pain is consumed.

Also…BE BRAVE!  Comfort those who are suffering.  Be bold and go out of your own comfort zone to do it.  It really does make a difference.  It’s not easy for either party but it’s GOOD for both.  I promise!  ;-)

Thursday, July 24, 2014

Kicking about half the Brain Tumor to the Curb. ;-)

Time for another update!  

It's been a busy week for medical appointments and news.  Latest CT shows the 5 tumors in Mark's body are RELATIVELY stable when looking at the overall picture.  There was only one tumor with significant growth and it was one of the ones in the liver.  However, bloodwork shows the liver function to be normal at present.  All the bloodwork looked good for someone who just underwent radiation.

The MRI showed the brain tumor has SHRUNK.  YES...this is a PRAISE GOD, newsworthy event for our immediate longevity outlook!!!  :-)  Mark will not likely expire today or tomorrow.  Yes, that's a little bit of humor.  I realize it's not a humorous situation but sometimes the only way to get through these things is to keep it as light as possible. 

There is a clinical trial that we are currently researching (when I say WE, I mean the doctors).  Here's the link for those that want to read about it:  Clinical Trial Link ~ Selumetinib
This would be to treat the other 5 tumors in Mark's body (lung, liver (2), gallbladder, & adrenal gland).  He would have to be off of the steroids for an entire month before they would even consider him a candidate.  As of today's radiologist appointment we are going to be tapering off on the steroids to every other day for 2 weeks then to NONE.  This will be okay as long as Mark has no neurological symptoms from tapering off OR does not begin to get headaches again.  So, it's a wait and see process.  We are also getting another opinion from a top Ocular Melanoma doctor in Pennsylvania.  He may know of some other life prolonging possibilities that our doctors here have not heard of yet.  We shall see.  Some of these new drugs require that your cells have certain mutations so there are labs being done right now to see if Mark's are compatible to this trial that's currently running.  (also, I'm just talking in laymen's terms to the best of my ability to recall what the doctors have said...I may not have some of the terminology right! disclaimer of the day!).

Mark DOES have some memory issues right now...recalling things he should know (not super important things like who his children are, ha ha!).  He also was not able to walk heel to toe without balance issues in the office today.  He says it's his flip flops but I will be keeping a close watch on his balance in the near future.  He is still very fatigued almost all of the time and has lost most of his muscle mass, which is very discouraging to him as he would like to be building that back up and wants more energy.  He is hoping the doctor will approve some physical therapy soon so he can begin improving his physical condition some, if that's possible.  

We are working through the mass of paperwork involving disability...looking at long term and social security disability in the future.  We were approved for short term but it's a very small amount compared to what we were making before Mark could no longer work.  Your donations & prayers have made ALL the difference in our ability to pay our bills and live life!  THANK YOU, as always.  We are living in a state of continual gratefulness to God and to each of you.  We are very aware of our need and where our provision comes from...and we are filled with awe on a regular basis at the outpouring of love and prayers and financial donations.

Our future is uncertain... we still do this one day at a time and we know that every single day is a gift.  We are trying to be very responsible and to cover all our bases.  HOME base is always PRAYER and GRATITUDE.  

Thank you for your continued prayers!!!  :-) 

Wednesday, July 9, 2014

Updates...Family and Cancer

It's been a bit of time since I last updated so here I am again!

I'll start with the cancer news:

Mark finished his radiation treatments and we will get new MRI scans at the end of July.  We have an appointment on July 30th to see the results of the treatment.  Praying for shrinkage, stoppage, or complete obliteration of the big tumor in his brain.  One of the things I think is so amazing is how the doctors are amazed at Mark's condition.  He's doing miraculously (yes...a miracle) well for a guy with a tumor the size and location of his.  So, as I've said before and I'll say again, Mark is a walking, talking, miracle!

We saw his regular oncologist today to discuss the 5 other tumors in his body and treatment options.  Realize, of course, that there are no CURES for this cancer, just possibilities of a little more time...UNLESS God miraculously heals Mark.  Anyhow, there is a trial going on right now that Mark will qualify for.  The requirements are that he has two metastatic ocular melanoma lesions (tumors) in his liver, of a certain size, which he does.  The trial is for targeted radiation along with the immunotherapy (Ipilimumab).  They will do targeted radiation on ONE of the liver tumors and not the other, thus the trial...all while doing the 4 infusions of Ipi, the immunotherapy drug.  Now, we don't know 100% if he will do this yet or not.  He is having new bloodwork and CT scans done THIS week and by Monday (July 14th) Dr. Haque, his local oncologist, will have everything he needs to see if Mark will be accepted into the study.  If he is accepted, some or all of it will have to be done in Seattle.  The real kicker is cost!  IF the trial will pay for the drug it would be totally exciting.  Ipilimumab is one of the most expensive cancer treatments available.  Unfortunately for Mark, his particular tumors will not respond to any of the "usual" treatments based on them testing negatively for some marker.  I can't remember all the details on that.  The expense is over 100,000.00 dollars.  YIKES!!!  And that is just for the drug itself!  So, if the trial will pay for it or part of it, it would be a win win for us.  They may also pay for travel expenses but we will find out all the details next week.  Asking for prayers that it will be totally provided for!!!  :-)

Mark and my thought on treatments at this point in the disease progression is just to buy time.  Time is so precious and you cannot put a monetary value on that.  Every day he is here is another day he gets to speak into the lives of our children and be their papa.  We want as many of those days as we can get.

Still we pray for a miracle every day.  Mark spends so much time in the Word and in prayer when he's in bed resting.   He has such a positive attitude and is so grateful for all the support and prayers we are receiving from all over!!  We feel so much LOVE from all of you.

NOW the Family news:

Mark's Dad flew back to Germany & CZ Rep. on the 1st of July.  We had a nice 2 weeks with him.  I know that Mark had a few good times of chatting over a meal with his Dad and that was a true blessing.

We took a trip to the Seattle area to be with family for the 4th of July.  We stayed at my Mom's and had a great time.  Spent the 4th at my brother's house with his family and we all had a fabulous time. MANY fireworks were blasted into oblivion on his culdesac!  It was beautiful... and exhausting for the parents!  Mark stayed at Mom's most of the time, resting.  He did make it to the Patton house for one meal.  Then He and I got to go on a movie and lunch date.  We saw AMERICA and it was really good.  We traveled home on Monday and stopped at Snoqualamie Falls.  Obviously we didn't do any hiking but Mark was able to walk around on the upper paths and there were lots of benches for resting.  I got a few good photos of Mark and the kids.  We had a great family time and made some memories.  The ride home was really nice and we took our time.  We came home and all of our animals and plants/garden were still alive, thanks to Mark's Mom who takes care of those things when we travel!  What a blessing to have someone who can do all that for you.  It's no easy task:  2 big dogs, chickens, rabbits, hamster, gerbils, koi and pond, fish tank, betta tanks in each kid room, flower beds, garden beds, hanging baskets, oh my!  It's a lot to keep it all alive, especially when the temps are nearing 100 or above!!

After the trip Mark was thoroughly WIPED out.  He had his first headache since he's been on the steroids. I was pretty concerned.  He was in bed for most of the day feeilng very unwell but he rallied by evening enough to sit out and watch the kids that was a huge relief!  Today has been a good day.

That's pretty much it for this go-round!  Just the facts.  I will post more soon.  Still keeping my journal and keeping up on the emotional and spiritual side of this journey.  The Lord has been faithful and is really helping us through this time in so many ways...through our friends and family, through the prayers, through the giving, through the LOVE!  When I am most troubled is when I feel His presence the closest.  It's so amazing, this love He has for us.

***I was going to post photos in this post but I'm having trouble with my cloud and picasa and general issues getting my photos from my phone to the computer.  There must be some setting that's been changed or something so I will work on that later and post them then!  Geeesh.  Sometimes these things are far more difficult than they need to be.

Sunday, June 22, 2014

What??? He's doing treatment now?!?

The answer to the title's question is, YES.

It's called Stereotactic Radiosurgery & you can look it up if you want to learn more about it.  

A little over a week ago Mark woke up and decided to go ahead with the offered targeted radiation therapy on the big tumor in his brain.  We were staring down the barrel of another month or two and it was quite obvious that Mark was slipping into increasing fatigue and lethargy.  He didn't feel like God was leading him, for certain, one way or another on the he just made the decision.  I'm glad he did.  Because barring divine intervention and miraculous healing, this cancer will take my husband...and I'd rather LATER than sooner, of course.  Any time this radiation can buy us is time we'll take!  We are hoping and praying that the 5 treatments will do their thing and slow or stop the growth...or kill the tumor entirely.  There is still the matter of the other 5 tumors in his body but the brain one is the one that will kill him quickly.  I'm glad he chose the treatment.  

As to the emotional side of this, for ME, it feels like we're in a holding pattern.  Just circling.  I need to try and live a little more normally but I don't know quite how to do that.  How much of this is coping, shutting down, protecting???  I don't know.  I do keep my journal and count my BLESSINGS in my journal of gratefulness.  I am keeping track of this journey.  I am treasuring the GOOD STUFF and trying to hold on to those things that bring hope and promise.  

I'll admit I've been a little, or a LOT, grumpy and irritable this past week.  This morning I think I got that straightened out with God.  I wasn't taking the proper time to be grateful and thankful.  I was focusing on the negative.  It's easy to do...that Negative wants to swallow you up whole and eat you alive.  It takes a concerted effort to find and hold on to JOY.  The joy is there...  the deeper the pain, the greater the joy.  I think that's true.  At lease I am going to explore that thought a little looking for the joy in each day.

One major blessing is that Mark is not in pain.  He is still taking steroids and other than the fatigue he is doing okay.  We still have not been approved for Mark's disability leave.  I have no idea why it's taking them so long. Seems a little ridiculous.  Or a LOT ridiculous, considering. 

Mark's Dad is here for 2 weeks, visiting from the Czech Republic, where he lives.  It's been nice to have more family in town!  My parents came this weekend and that was a joy!  My Dad (Ron) and my FIL put new siding on the front entry.  Talk about something that makes ME happy!!!  They did a wonderful job and now I need to paint it.  No more embarrassment when people come over.  There are so many little (or big) projects like this that Mark can no longer do.  He's doing well to make it upstairs and to sit out and watch the kids for a while.  

My honey is no longer capable of the "Honey DO" these days!  :-(   He's pretty much capable of doing anything which is one of the things I've always loved about him.  He's a brilliant fellow in so many regards.

I also want to thank all who have given to us.  From our friends and family we've had monetary donations, offers galore, cards, special gifts via mail, & more.  Our family has done SO MUCH for us!  We are HUMBLED and SO VERY THANKFUL for each and every person who is praying, giving, and LOVING us from near or far!  THANK YOU!! THANK YOU!! THANK YOU!!  

I am planning to get out actual thank you cards in the mail one of these days.  There is no way I can fully express the love we feel from all of you.  Bless each and every one!  

We've been trying to capture as much fun and family time as Mark's energy will allow!  
Rowing around at Two River's Park 
 Avi and Libby ready for the filming of their movie.  The kids have had to get really creative with all our home time and they have done a tremendous job of being adaptable and good natured!
 Esther had to go it alone.  Thankfully we had a lead line, just in case.
 How I spend my quiet mornings if I get up before anyone else.  I sit by the pond and journal and read.  It sure helps keep me focused on what's important and it's essential to keep me feeling at peace!
 Father and Son...My Two Favorite Guys!
Papa and Libby at the River
Papa and Libby ready for their date.
at Happy Tummy on the West Side.  It used to be one of Mark and my fave places when we lived in Mukilteo.  We did a lot of little side trips to reminisce and share our special places with the kids.  We went to the beach at Mukilteo then out to lunch.  It was a fun and memorable day for all!

Mark and Avigail on their special date.

Friday, June 6, 2014


I haven't written in here in some time but I have been regularly journaling in my private journal.  Some of this journey we've been on has felt too private to share but someday I hope to be able to share it all.

As anyone who has followed our family knows, last Fall Mark was diagnosed with Metastatic Ocular Melanoma.  It's stage 4 cancer.  With this type of melanoma there is no cure.  There were treatments offered but none that would cure it and the margin of possible life extension was slim, at best.

We chose to go the route of trusting God, seeking God, and living by faith throughout this.  He has been so gracious to us.  Mark has remained asymptomatic this whole time.  He remained faithful to his job and all his other commitments.  It wasn't until Easter weekend when we were visiting my family on the West side that he began to have severe headaches.  He saw a walk in clinic doctor in Edmonds who consulted with an opthamologist and an oncologist and decided to do nothing at the time, just advised Mark to take pain relievers like Tylenol and to go get an MRI when he got home.  Since it was time for his 3 month check up scans anyhow, he requested a brain scan, which hadn't been done to date.

When he went in to get that done the doctor called right away and said they found a mass in there.  Mark was at work at the time and couldn't really deal with that information.  The headaches increased so much he could not work within a couple days of that news.  He got a prescription from his oncologist for some steroids to reduce the brain swelling.  They have fortunately also reduced his headaches vastly!  We got in to see a radio oncologist right away, Dr. Cheo, a very nice fellow who told us that Mark probably only had 2 months to live with a tumor this size ( ball sized) and 3 months if he continued to take the steroids.  It was in the left side of his brain, centered in the part of his brain that controls his right side motor function.

The doctor did offer radiation therapy, which is gamma knife radio surgery...targeted gamma rays to the tumor only and not whole brain radiation.  It sounded somewhat promising until we heard the possible things that could go wrong and the fact that there is a 70% chance of new tumors forming after that one was possibly controlled, if they could get it controlled.  Ocular Melanoma is a form of cancer that is resistant to Chemo and Radiation so it is hard to control.  Ocular Melanomu, unlike the skin melanoma, metastisizes in the BLOOD STREAM, not in the lymph system, so it can take root anywhere at any time.

At the same time, we got the results of the latest CT scans.  He had 3 NEW tumors in his body.  A new one in his liver (that makes two in his liver now), one in his adrenal gland, one in his (I can't remember and will add later), and then the one in his lung.  The one in his lung is stable but the liver tumor has grown and then there are the three new ones.  NOT a good sign and they did say once it starts progressing like this it will go very quickly.

I cannot begin to tell you all how devestating this emotional it has been, the turmoil, tears, pain, worry, planning for our "future"...

THIS IS THE MOST DIFFICULT THING WE HAVE EVER FACED.  No one plans on this.  You cannot prepare for it.  It cannot even be comprehended.

We live each day...KNOWING, yes KNOWING, that it is a gift.  That, in and of it's self, is a GIFT.  Not many get to live with this perspective.  Everything is precious; every photo, every memory made, every moment.

I will write more later but I wanted to update my friends and family who read this blog and I want to have a record of this online.  I will add some of what's in my personal journal soon.  I so want to share all the good things that have come about because of this diagnosis/prognosis.  All is not terrible and lost but all is redeemed.  Things may not turn out the way we hope and pray...but we know we are in good hands when we put our anchor down into the love that Christ has for us.

Yes, we are feeling more love than ever before...from our God, from our family, and from our friends.  We are humbled and thankful.  Overwhelmed by the goodness of God and of people!!


On the left of this blog I have posted a link to a fundraising site that my sweet friends here made for our family.  Mark is no longer working and though we are not doing any extensive treatments we've already amassed extensive bills!  We are in the process of applying for short/long term disability but it is only a fraction of what our normal income was...especially with no on call pay or overtime.  So far we have been provided for abundantly.  If you feel led to give, we'd be truly blessed but mostly we value the prayers that you send up for healing and for our family.  I felt a bit weird posting this link to the blog but we do need some help and definitely we need more prayers!!!!

Sunday, March 30, 2014

The "Magic" Number

It's been AGES, I know.  So much for my good intentions.  Life has been busy and full of obligations, business, and laziness.  Ha!

ESTHER turned 5!  I can't believe that my youngest is 5 already.  For some reason I thought it was going to be the magic number and my life would be so much easier once she reached that age.  I had been so looking forward to her turning 5 but as it began to approach I could tell that it was not my lucky number.  Maybe 6 will do the trick.  She is delightful and BUSY and fearless.  Interesting combination that I'm sure will serve her well when she's an adult.  It comes in handy that she's also adorable.

Everyone is doing very well.  Mark is still asymptomatic, for those wondering.  He goes weekly to the Healing Rooms and we are now attending church regularly at Columbia Foursquare.  I'm still involved with MOPS and I'm leading a Daniel Plan Bible study with a group of friends.  

Ooooops, TIME FOR BED!  Mark just informed me.  I will catch you all up, if that's even possible, another day.  Enjoy the pics of E on her special day!

<3 div="">

Saturday, August 17, 2013

War and Peace

August 17th, 2013
Yesterday I started a journal.   I want to share it with you.  It is deeply personal but it is a testimony that I am compelled to share.  It’s only two days in.  Who knows what the future holds!
August 16th Entry:
It’s been two days since Mark came down the stairs and I could see by the look on his face that the news was not good.  I had not prepared for anything less than good news, manageable news.
It’s a bad one.  This is what it means to walk through the valley of the shadow of death.  I am not ready to walk through it.  I need strength for my family; I need strength for myself.  I can only cry or move about and pretend it’s not real.
Mark went to The Healing Rooms last night to be prayed over.  He will be going every week.  He is pursuing God and believing in a healing miracle.
I want to believe in that too.  I’m afraid to believe in it.

August 17th, 2013
I am a new person today; a truly new creation.
The person I was yesterday was filled with the dread of our situation, sadness, dark thoughts.  I was falling apart.  Knowing that you spouse is dying will do that to you; getting a death sentence of a prognosis.
Today I am filled with the peace that passes understanding.  I truly am.  This is not of me.  I could not break out of my grief on my own, but GOD has broken me out and insulated me from the darkness.
I must digress a little to explain how I got here:
On Wednesday we got the diagnosis from Mark’s lung biopsy: STAGE 4 CANCER, Metastatic Melanoma, two words that I am now OVER familiar with.  Metastatic means that it has traveled from somewhere else in his body.  Mark had ocular melanoma nearly 20 years ago and has his eye cut out and did all the radiation and treatments that the doctors prescribed.  What I didn’t know when we got married was that the fact he was even a live was a miracle then.  I knew he’d had cancer but we never talked about it.  I didn’t know it was a threat still, silently moving and growing.
Anyhow, Mark came downstairs after his biopsy results appointment and for a brief moment, such a small moment, he gave a little smile and I had hope that all was well, and then his face changed and I knew that it was not well.  The reality pierced me. I had not considered that things would not be okay.  Bad things like this happen to OTHER people.  Not me.  Not us.  Not MY family.
I didn’t really understand the prognosis at first.  I saw chemo and surgery in our future, a long process but a little hope was in that.  Then throughout that first 24 hour eternity I came to realize just how grave the situation was.  This was STAGE 4 Melanoma.  There IS NO CURE!  There is only a slowing of the death process.  Medically speaking, of course, this would indeed involve chemo and surgery BUT TO WHAT END???  To destroy the little bit of life, however long that be, with medical treatments that will make sick and destroy what is healthy as well as what is sick but never cure anything, never bring life, never bring hope.  Never grow old together and die with our kids and our grandchildren around us?
This is now Saturday, the 3rd day after diagnosis.  I can say we’ve been through all the emotions and worry, the whole gamut of them.  It was like this for me:
-          Hope in medicine and doctors
-          OH GOD – He’s going to DIE!
-          Despair & darkness washing over me as I imagined, almost constantly, life without my husband, my children without their father, and marking having to face death at such a young age. 
These days have truly felt like an eternity.  I am drained.  But, wait!  I am filled.  I am insulated.  I am safe in the LOVE of GOD.  The prayers of the faithful have moved the Holy Spirit to change me, to lift me out of the mire and darkness and bring me to a place of hope and peace.
Mark’s process has been different than mine.  We started out on the same page, kind of.  He’d had time to think about the reality that it may be a reoccurrence of the melanoma, though he kept that to himself and we believed the results would just be that it was a benign nodule in the lung, which is not uncommon.  At first we talked about pursuing all the medical paths AND trusting God and praying for a miracle.  As I was working through my darkness, he was being filled with faith and hope.  He went and got prayed for at The Healing Rooms.  He believes, 100% that God is going to heal him.  He is filled with joy and optimism and hope.  I have to say that I did not share that hope and optimism.  I was in turmoil and I could see that we were growing apart, being separated.
Last night was bad AND miraculous.
We talked and it was not good.  We were unequally yoked; our beliefs so different.  I just could not believe what he believed. I know God heals and that there are miracles all the time but I cannot believe 100%, that Mark will be healed.  There is the very real and looming death sentence he’s been served.
The area of healing has always been a contentious point in our differing beliefs.  We believe in the same God of the Bible and in the Bible, the Word of God.  We are both saved.  But when it comes to healing we’ve had many impassioned discussions throughout our marriage.  Interesting that healing should be a point of contention between us.
As we were discussing, I was being pulled further away from the oneness that we’d had until I felt we were truly two.  I know I was under spiritual oppression and attack.  I was angry at Mark.  I was feeling betrayed because he’d moved from the worldly position of, we’ll do it all as well as seek God, to we’ll just believe in a miracle.  He’d moved through all of that without me.  He was in a place of peace and I was not.  I felt alone, betrayed, and judged.  Judged because I didn’t have faith that God would heal Mark.  I keep clinging to the fact that God does not heal everyone.  He may not heal my husband.  We can believe and pray and he may still die. 
I KNOW spiritual oppression and battles because I feel them physically.  There is a spiritual BATTLE always going on around us, vying for our hearts and minds.  While we were talking I felt like I was going to faint and I was afraid and panicked.  I was overcome with thoughts not my own, the battle was going on for MY heart and mind and I felt it keenly.  I felt Satan pulling our marriage apart, pulling us apart, killing us.  I was so afraid.  Afraid of what might happen to me.  Afraid of being out of control.
This was the same feeling physically and spiritually that I had just before I was saved when I was 21.
I was standing there filled with all these dark things and a wave of peace washed over me.  The darkness was dispelled – instantly. 
It does not matter that Mark and I have some different beliefs.  Once again in my life the battle was waged in my very soul –
It was like salvation all over again, where I became a new creation.  The scales fell away.  I am not the same person I was yesterday.
I CHOOSE to be FOR CHRIST, FOR my husband, and FOR my family.  I will not let Satan have his way here in our home.
I share this story because there are so many faithful people out there praying for us and God has moved.  I was able to sleep peacefully last night.
As I was standing there and the scales fell away and I was changed, I felt enveloped in peace.  I felt insulated and protected from the darkness, shielded from the fiery darts of the evil one. 
THIS is a miracle.  Truly.  I wish I could share it in such a way that it could be felt by anyone who reads it, but it can’t be put into words that are adequate.
I am at peace.  I trust God.  I don’t have the answers.  I don’t know the outcome.  I just know that everything is going to be okay.

We don’t know what the future holds but we do know who holds the future.

Monday, April 22, 2013's been a LONG LONG time

...and a lot has happened since I last posted.  There have been a lot of photos taken and NOT posted to this photo/life blog of our family.  I suppose it's because I post things automatically to Facebook.  Here begins another attempt to keep this blog going.  One of my reasons for having this is now in heaven.  Rest in peace, Grandmother Maxine.  I know you're with the Lord in Glory!

Here are some pics from today!  Avi and I went on a sunrise walk along the Columbia River with Condi and our foundling, Scout!

Next, here are a few pics of the kids and all our new rabbits and baby bunnies!

Friday, July 6, 2012

Lewis and Clark Trail State Park

Avigail, Esther, and I went for a little walk.  The walk took us across Highway 12 to the day use area of Lewis and Clark Trail State Park.  Adjoining the day use area was a fenced pasture with 4 lovely horses.  The white one let the girls pet her and feed her grass.  The girl were thrilled with their horse encounter.  Avi would have stayed all day...

 The old bathrooms, built in the 30s all of river rock.  Pretty cool!

 Trying to coax the horse into coming back....
 It didn't work.
 The surrounding terrain.
 Walking the park grounds.

 Avi's photo of the tree and hillside.
Esther was tired so we were waiting for Mark, Azriel, and Libby to come and pick us up in the Suburban.

Our First (with all 4 kids) Family Camping Trip!!!

Going Camping!!!

On the hiking trail at Lewis and Clark Trail State Park...

Our first glimpse of the Touchet river.

Archway of branches.

Trailer camping 101, our first time out!

The Touchet river.

Avi in the Touchet river.

Avi really IN the Touchet river.

Hanging out around the fire.

Esther is always busy... practicing casting with her little fishing pole in the background.

Thursday, March 29, 2012

Trying out an online curriculum for the kids!

I've been invited to try Time4Learning for one month in exchange for a candid review. My opinion will be entirely my own, so be sure to come back and read about my experience. Time4Learning can be used as a homeschool curriculum, for afterschool enrichment and for summer skill sharpening. Find out how to write your own curriculum review for Time4Learning.

I will edit this post to say that the online curriculum did NOT work for our family.  The big kids did not like it at all.  The graphics were not appealing to them and I had to put their level higher in order for it to be challenging.  In it's favor, both the little girls enjoyed it...but then, they enjoy any little cartoony games online.

Saturday, February 25, 2012

Avi having a breakfast date with Papa!

We started a new reward program in our house.  I had gotten these certificates for Denny's (yes, Denny's!) and we have one for each child.  We gave each child a 7 day challenge based on their individual issues.  Avi's was no whining.  No whining for SEVEN WHOLE DAYS!!!  She made it!  Well, there were two days where she did whine, but she was able to STOP her whining,which she'd previously said was impossible, and change her behavior!  I think this has been a wonderful little lesson in behavior modification for her.  She now KNOWS that she can STOP they cycle of whining before it consumes her.  ;-)  She had a wonderful breakfast with Mark followed by some shopping. She had a great time and I'm thrilled with the results of our little experiment.  Now if Libby can stay in her own bed without seeking me out in the night for 7 whole days, she gets a Papa date too.  Az, well, he has to quit whining...  LOL!  He CAN do it and I think that since he had to stay behind today while Avi got her special time that he has a new resolve to be successful in keeping a positive, non whining attitude!
Libby has one night under her belt.  She keeps having to start over but maybe, just maybe, THIS will be her winning week!!!

And to sweeten the pot...I have NEW rewards for new challenges. Got some great deals on BOWLING.  Papa dates for bowling should encourage some positive behavior changes!!!  :-)