L G Squared

What a year it has been!  I thought about looking backwards and making a list of everything we have been through.  But I decided that it would only be depressing! And we struggle with depression enough without knowingly adding to it!  But if I did, it would look something like this...MS that never gives a break, chemo, Ohio trips, tumor, ER/blood clots/ICU, jaw surgery, central line, plasmapheresis.

I thought about making a list of how we had been loved and cared for this past year.  Because man, we have been loved and cared for over and over again.  God has provided to us over and over again through ordinary people.  But the list is so long, I would never finish!  And...I might leave something out because my brain is mush!  But if I did, it would look something like this...house keeper, meals, counseling sessions, massages, cards and gift cards, monetary gifts, visits, phone calls at just the right time, errand runners, allergy shot taxis, furniture purchaser and installer, personal home renovator (aka Noel),  happies delivered to our door .... the list goes on and on.

So I decided I would think forward into next year.   I have no clue what details life will bring.  We know we continue to stand in a fight against MS.  And we know more chemo is on the horizon.  We know more heartache is inevitable!  But there is something that I think will be our life mission for the next year.  We are going to try to live every day at the Smith House with more love, more grace and more gratitude!

More love...our love lately has been very conditional.  As we embark on a new year, I pray that we would love like Jesus.  We would love with no strings attached.  We would love with pure hearts!  We would love God, love each other, and love others like crazy...crazy love!

More grace...our children didn't learn to be judgmental all on their own accord.  After all, God's grace is sufficient for each of our needs!  So if God is filling us up with His grace...why won't we demonstrate grace to others around us?  As we enter 2016, I pray that grace would abound.  I pray that our judgmental spirits would be replaced with grace for others.  I pray those unrealistic expectations we place on those around us, would be outlined with grace.  I pray that God's grace would continue to sustain us each and every day.

More gratitude...we have days where we are grateful and thankful.  Well, maybe I should say we have MOMENTS where we are grateful and thankful.  A lot of other moments are not filled with gratitude!  They are filled with dissatisfaction and complaining.  I pray that we would learn in 2016 to see God's hand in everything.  I pray that our hearts would continually be filled with praise.  I pray our attitudes would show Jesus in us!

If we can simply remind ourselves over and over L G Squared.  Love, grace and gratitude! All year long!  No matter the heartache, no matter the situation, no matter the disease.  L G squared.  Love, grace and gratitude!

Glimpses into our Christmas

Wow...to just give a glimpse on this topic is hard because it is so complex to us!

Secret Santa delivers gifts early sometimes.  At least he did last year and again this year.  Really, I haven't even been able to talk or write about this topic very much.  When I think of this Santa, I really struggle!  I've heard everything my friend has told me about Secret Santa and receiving love and I try to apply it but then I find myself right back at those unworthy and uncomfortable struggles.  Still working on processing that one!  But it was a VERY special evening as we opened and remembered our Santa.  And if Santa can hear and see this...it might give a glimpse into what we felt!

Homemade cinnamon rolls, pumpkin and banana bread, egg casserole, biscuits and gravy ushered in our Christmas morning!  Yum yum!  And then onto a new excursion for us on Christmas day.  We felt led to purchase gift cards and just deliver to some people who were working!  It was quite a fun experience other than the horrid rain and flooding!!  When we gave the gift cards, the employees would just look at us with wide eyes like they couldn't believe we were doing that!  Every one of them very gratefully received.   They were excited to receive on top of that!  There was much for me to learn in that experience.  I receive gratefully sometimes...but I don't know that I am ever EXCITED to receive!  The joy on their faces were so special.  And then we did something else.  We took two big pans full of home made cinnamon rolls to the ICU where Zine spent a week.  We all thought it was a great idea!  But oh my goodness, I stood right outside his room at the nurses desk as we chatted about our thankfulness for all they had done for us!  And emotions totally OVERWHELMED me.  I walked out of that hallway to the elevator and the tears began to flow.  And they flowed on and off all day long! I don't think I was ready to do that!  Zine and I talked about it later...we called it Post Traumatic Stress!!  It was definitely a trigger point for me! I was telling a friend about it and she wanted to know if it was healing.  And I still don't know the answer to that.  It didn't feel like healing...but...then again...maybe it was!

This was our second year to not be with our family!  It is indeed still difficult for me.  Zine seems to be content and I think grateful to be just us.  A sweet phone call came as a FaceTime and I got to chat for a minute with my family!  For that I was super grateful.  Somehow it came up later and I asked Krisann if she would rather have Christmas here or in Arkansas.  The answer was here. I asked her why and she said because Santa comes here.  I asked her if she remembered when Santa came to Arkansas and she has no memory of those experiences.  It made me incredibly sad!  I have two kids who have been raised with lots of family around and have such sweet memories.  But Krisann...this is  now normal to her!  At four she was still small enough to not carry those memories forward!  And it made me think of all the memories Conner and Chloe will have of life pre MS and how much Krisann will never know.  Gut wrenching!  I tell Conner and Chloe they have to tell Krisann about the things dad used to do!  And over Christmas I watched Conner do something for Krisann that ushered in lots of memories.  Krisann got tired walking and Conner reached down, picked her up, and put her on his shoulders!  This was one of those moments that melted my heart.  You see, that was what Zine used to always do with our children and Krisann has never been on his shoulders!  The other two got many miles up there on his shoulders!!

Even through Christmas, it has pricked my heart to cry out more to Jesus.  Yes, I have been mad at Him...(sort of).  Not sure mad is the accurate word!  But definitely knowing that He is the only One that can take this heartache of MS away and He has chosen not to!  So sometimes I do get frustrated when I know beyond a shadow of doubt He can take it all away!  But through the Christmas season, it has pressed me into a deeper heartfelt request and longing...Jesus please take this MS away!  Please please and please.  Please please and more please.  I remember looking at our pastor one day and saying I just want it all to go away!  I think I may have even had pleading eyes and asked him to make it all go away!  Sometimes, there's just a desperate feeling to be rid of MS!  We are in one of those seasons!

But...even amidst all this...as I reflect on our Christmas...there are many fond memories I hope will stick with me.  I loved the blessing others on Christmas morning.  I loved our secret Santa time on Christmas Eve.  I have LOVED having Advent Family devotionals for the month of December.  Those have created many sweet family moments!  So amidst the struggles, there have definitely been some sweet sweet moments!

But yet here comes Monday, and we embrace this MS stuff again with a doctor appointment with oncologist. It is never ending.

Conquered

For the first time in my life, I want to stand on top of my house and yell for the whole word to hear...We are done!!  And not done as in we quit!  But done as in we conquered this feat!  This process has been most difficult.  Internet at the hospital has been almost non existent...which has made posting updates near impossible.    And I can not even begin to explain how tiring this has been.  So I've had absolutely no energy to think nor type.

These kids have kept us going this week!

Every day, I think, we can not keep doing this!  But then these faces remind us there is a battle raging and we are to stand in the fight!  So...the next day, I talk our entire family into the mentality, we can do this, we can conquer this part of the battle.

Zine has done very well!  Friday was a very difficult day.   A machine broke and his blood spilled in the floor.  A second machine was brought.  It let blood back up into someplace it shouldn't so therefore more of his blood wasn't being returned to him.  It was the day the nurse called for me to come because she wanted to talk to me.   It was simply put a bad difficult day.  On Sunday our church family prayed for us at the exact time the procedure was going on and it was the best and easiest day out of them all!  So thankful for their prayers and thankful for an easier procedure.

But my husband has been past going on treatment days.  After treatments, he is physically exhausted.  He can't even hold his head up.  If he is awake he has used his hand to hold his head up!  But mostly he sleeps.  He sleeps hard.  So we've been in quiet mode here.  Of course, I think we could bang pots and pans and he would still sleep through them.  But...we've tried to be quiet so he could rest.  He thinks it's okay because he's just exhausted, he's not throwing up!  Throwing up is sick in his book.  Exhausted, like he has been, is sick in my book! But whether we agree that he is sick or not sick... the process has wiped him out!  

And my heart has been broken for him.  For our situation.  For where we find ourselves.  Many tears! And I have found myself with lack of sleep and exhausted!!  

Zine's out in the picture above and I have even found myself on the sofa a few times this week.  If I lie down on the sofa, you know I'm exhausted...I rarely ever sit down to begin with but then to rest is totally unheard of. 

But in the middle of this pain and heartache and sheer exhaustion, God just let me see the past few days, the opportunities He has given us.

The post op nurse rolled Zine back to me last week, and said, he definitely wasn't with it when he came to me, but since he's woke up he has blessed me tremendously!

The lady that cleans where I have sat many hours lately, several opportunities to visit with her.  I told her today I would come back sometime just to see her.  I was sad to tell her this was my last day there!

The nurse who was having a horrible argument on the telephone where I was sitting...well...we were able to just pray for peace for her.  I hugged her as she and I passed in the doorway to the bathroom and she was sobbing. Later she came over and apologized for the argument she had on the phone.  What a blessing for her to come apologize but for me to say, I understand what it is like to argue with your husband.  It is no fun and my heart is hurting for where you are right now!  And then we just shared we had been praying for peace for her.

The nurse who took care of Zine whose husband was a physicist and an atheist and how Zine was able to speak to her so tenderly and from a scientist standpoint.

These are not happen chance meetings.  These are God given opportunities of ministry.  We have always prayed that in the middle of where we find ourselves that others would see Jesus in us and that we would be a blessing.  And as we have navigated this season, I have felt that we often miss opportunities due to our negative emotions.  But over and over again, throughout this process, God has really shown me how we have indeed made a difference.  

Not only have we seen how God has used us to bring His love to others...at the very same time God has been showering us with His love!  I quickly discovered on the first day that for those hours that the process was going on, I did not do well alone.  And I actually communicated that I didn't like that (which I typically never do).  And you know what...God sent people to sit with me EVERYDAY after that.  For each of those ladies who came and sat with me, I will always cherish my time with them.  There were no deep intense conversations.  But they were fun get to know you better conversations or catching up where we each were in life.  A total blessing for ladies to take HOURS of a day to be with me!  Forever grateful!  Grateful for those that got to help me make decisions at the hospital.  In the situation I found myself in, I often couldn't think through things.  So...for a friend to say, yes, let's do this...I loved it as well.  Sometimes I just need people to step in and make decisions for us when we are overwhelmed and to have friends that did that this week, was quite the blessing.

For those that have brought or bringing dinner to us, thank you very much!  There is no way I could have cooked.  But yet no one felt like going out!  So...meals have been a HUGE HUGE blessing!  My sweet friends Becci and Lesley sprung into action on that set up and I'm so appreciative of them just recognizing that might be a need and getting on it.  They didn't even ask...they just did...and I loved it!

I've had to be reminded several times this week, to rethink love offerings, to not walk in my own strength, but to let others carry part of our burden.  I definitely don't always walk in that perfectly. 

And my crazy Santa from last year, has been on the job already this year.  Thankfully, I didn't meet him in a parking lot.  This...this...this...no words.  I really struggled with this.   So I definitely do NOT receive graciously all the time!  

 

But tonight, I am so grateful to have conquered this mountain!  Now we have approx 6 to 8 weeks, before we begin a pretty rough 5 day chemo treatment.   

But in the meantime, tomorrow we will have his cath changed.  That was scheduled long before we knew we would have just finished this lengthy process.  We also really really want to get this central line out!!!!  He would so love to get it out before Christmas.  The chances that we will obtain that might be slim...but we are praying for God to work a big miracle and he would be able to get this central line removed!!  But it involves two doctors communicating together and it's almost Christmas.  But God is big...He can make it happen!  So we wait and trust.

But really....we are DONE!!!  We conquered this BIG mountain!!  Whew!  It will take us days to recover though.  The process is done...the recovery is not!!  And the emotional trauma will take even longer to process!  And maybe...the tears will slow!!!

Blood Out and Blood In Is Wearing Us Out

This process has sucked the life out of us.  Will try to do a quick recap!  Please know I have left out details on purpose.  You are simply getting highlights!!

Monday morning we began our day early for a surgery to put in a central line.

The entire process did not go without hiccups to say the least.  But in the big picture the hiccups to begin the day were minor!  The worse was yet to come.  Surgery was successful, the line was put in, and Zine did well.  The wife waiting for him did not do so well!  I have since decided I do not do well without him with me!  I haven never really thought about how much I depend on his emotional support and in his presence until we are not together and I struggle!  This guy makes me so much more brave and so much more secure when I'm with him.  Yep, he makes me lividly angry sometimes too...but that's just part of being married!  :-)  (I couldn't say too many nice things about him...don't want it to go to his head or anything.)

After recovery and post op was completed Zine was taken to have his first blood procedure done.  We had been adequately prepared about the procedure itself and what to expect.  But the logistics we knew we would learn at the hospital.  Long story short, we had a communication breakdown between  I and the medical staff.  I will not share details but shall I just say that by the time we were reunited three and a half to four hours later, I was an utter basket case!!!!

 

I really and truly do not think that I have ever experienced such a difficult time.   By the time we left the hospital, I told Zine I really hated he had gotten that central line put in because I had no intention to ever return!!  Thank goodness for a friend who could help smooth the path out for us!  Angels sometimes look like human beings that show up out of nowhere.  Sometimes God uses your long term friends as angels and that's exactly what happened this time!  Even with the smoothing out, I wasn't sure how in the world we could continue on!  

Our stress level is through the roof!  Or at least mine and the children are.  Zine is in function only mode.  Emotions are not on his radar right now and that's okay!!  He just has to function and do what needs to be done!  So I'm glad that he is immune to the emotional trauma!

Zine made you some pictures so that you can better understand what is happening!

Today, his calcium levels had dropped so after the procedure he had to have an IV bag of calcium.  His platelets are down today.  By my calculations, I am concerned that we will not finish this exactly as planned.  I am praying fervently for those platelets to stay up but we don't have a lot of wiggle room before there are issues.  Not borrowing trouble, but definitely recognizing the possibility that we have been educated so well on.  

After this procedure is done...Zine is exhausted.  This afternoon he tried so hard to keep his eyes awake but he just looked utterly miserable.  I didn't have to ask him to close his eyes but twice and he was out!  This guy is a fighter like no one would believe!!

When they bring him back to me after the procedure, he is SOOOOO pale! 

How are we?  As I stated Zine is in function only mode and that's exactly where he should be!

I am in function only mode coupled with huge emotional stress.  I think I have done a pretty good job of keeping everything together and being the strong wife and mom.  But something broke last Friday and since then, I've been a complete disaster.  Not only a complete disaster, but absolutely exhausted!  I have forgotten regular things (parent day at dance, art class for Chloe, my cell phone today) these are all evidence that my brain is mush!!  Absolute mush!  So please don't tell me anything you want me to remember!  Because I promise I won't!

Our children...well Conner...I don't know if I should worry about him or be thankful....so I do both!  This guy rolls with the flow as it goes with the medical issues.  Or he portrays he does anyway.   Whether it is asking him to help get Zine up when he falls or this week to help Zine scoot down in the bed, to fix his dad a cup of coffee, or help me with something in the house, this guy just does it with NO complaints.   I'm   certain it has to bother him but he is like his mama and holds his emotions very close to his heart!  He has been in charge on the homefront!  My house is still standing and no appendages have been lost.  And the girls are still breathing!  So...I'd say he's done a good job of managing the house this week so far!

Chloe doesn't want to talk about what's going on.  She withdraws a lot.  She also struggles to recognize that stress does crazy things to your body.  So when she has physical symptoms of stress, she thinks there's something wrong with her.  I had to explain to her that there was not a place on my my body that didn't hurt.  But I wasn't worried something was wrong...I knew it was simply stress.  Stress has literally made she and I both sick this week.  So on Monday night after I am completely exhausted and emotionally spent, she needs me!  And I parented her the best I knew how without being drawn into a long emotional conversation that I did not have in me to have.  She's still quite reserved and withdrawn.  Thankfully, she and I have a counseling session on Thursday.  I would say that is perfect timing!!

Krisann, well Krisann is breaking my heart.  She is becoming so much more aware of the heartache that exists. She is displaying many many signs of wanting to fix things.  Things that can't be fixed, she's looking for ways to fix them.  She has been incredibly needy...especially of me!  I've been working hard at drawing boundaries with her and teaching her what is good and what we don't need to do just because we are stressed.  I desire to teach her even early how the best ways are to cope with stress.  Last night as we sat down to do our devotional, she asked us to pray for her.  She told us she had been having problems with her "actions" and she really wanted to do the right things!  That my friends, melted my heart!!  What a blessing for your children even at the age of 6 to say I want you to pray for me!!  Wow!!!  So...we did exactly that we prayed for Krisann!  

And Krisann loves her pale face daddy!!  

She's very protective of him at times!  I often wonder exactly what role she will play as she gets older!  But reminded everyday that she is a gift from God!  Grace is her middle name for a reason!

I would love to say this process is done...but we're not even halfway done yet.  We definitely need God to sustain us.  Thank goodness He promises His grace is sufficient. Now sometimes, I'm human. One day this week, I was just mad at God.  The One who can take this heart ache away is not.  And I was mad.  I didn't want to talk to Him.  I didn't want to talk about Him.  But I am confident (after much condemnation was dealt with), that was okay!  He understands the heartache.  He knows I love Him.  He knows I will not turn my back on him forever.  He knows my hurt is gigantic.  And that does not make me a bad Christian.  That does not my faith weak.  Instead it makes my faith real!  And that's exactly what God wants.  He wants me to be authentic and real!! And God doesn't wait for me to finish my temper tantrum to hug and love me...He loves me in the middle of my temper tantrums and gigantic pain!

So there's not just physcial battles we are fighting, there are spiritual battles, relational battles, emotional battles and simply put a battle with the enemy.  No wonder we are exhausted!!!  But we will continue to stand in the fight.  The battle rages on all sides.  But we will stand.  

Please please pray fervently for us!!  We need it!

Yes! We survived today!

We started our day at 9:30 at the Oncologist.  We are always treated like stars when we go there.  The infusion center is wonderful.  The nurses love us and we love them.  Dr. G is very nice.  He commands a lot of respect and he very much is decisive and has a plan.  But we like him!

Today Dr. G gave us lots and lots of details about our upcoming adventure.  We have a definite plan but that definite plan is up for changes at any point.  We are planning for a treatment on Monday, Wednesday, Friday, Sunday and Tuesday.  However, there are many complications that are possible.  We are starting outpatient but very much understand there is a chance that we could end up admitted at any point.   We understand that Zine's platlets can drop and if that happens then the whole schedule goes out the window.  We understand that we are looking at various IVs to replace some things that will be lost or damaged in the process.  We understand the risks.  But amidst all of the scary things we heard, Dr. G looked at us and said, with as much comfort as I've ever seen him exhibit,  I have never lost a patient in this process.  We will cling to that over the next couple of weeks as a piece of comfort for sure!!  He also said to us, I would love to come be with you during this process but often it is when I am seeing patients.  But I will do my best to get to the hospital and see you as you go through this.  But assured us that he was the one making the decisions and he would be informed each time before the process began and he would be the one deciding if we proceeded or if we didn't.    So...I felt like we saw a different side of Dr. G today.   We saw a great deal of compassion from him today!

We then walked to a different hospital building and met with the vascular surgeon.  We both really liked him.  He and his nurses were super nice to us as well.  He explained that they would put in a dual central line.  Compared to the port this is a large tube.  He wants to try to keep the central line away from the port.  If an infection were to set in, if they are close together then they would both be at risk.  So the hope is to put the central line on the left side if possible.  But that could change when he gets Zine to surgery and actually threading the tubing to where it needs to go.

So all that took us 5 hours!!

On Monday, we will be at hospital at 7:30 where they will do an outpatient surgery and insert the central line.  When we are done with that procedure they will send us to where he will have his first blood process done.  So we are prepped to be there all day long on Monday.

I know that God is with us.  It is no coincidence that this is Christmas season when we often refer to Christ as Immanuel--God with us!  So that has really stuck out in my mind today.  God is with us.  Definitely don't want to walk this path.  Nope nope and nope.  But as I told someone earlier, I might shed lots of tears between now and then but come Monday, I will put my brave face on and I will embrace our day.  Kinda like telling your children to be brave before they get their 4 year old shots.  (which by the way I think are the absolute worst)!

I asked Zine how he felt about everything so I could put it in the blog post and he didn't come up with any feeling words.  He grimaced and said, it's another surgery!  He also said I hope it helps.  So I think he's pretty disengaged from the situation right now.  He is in function mode.  Doing what needs to be done!

I am personally very tired tonight.  Krisann and I both are struggling with loads of congestion.  I have been teary eyed today.  And feeling overwhelmed at times.  But yet I am calm.  There's no frantic feelings. There is an apprehension and a bit of fear about what's to come.  But I think there's a peace as well.  God is with us and that promise I am resting in and if I'm not resting in it, I am speaking it to myself!

We do cherish your prayers the next couple of weeks.

The New Adventure

Friday brings two big appointments.

At 9:30 we meet with the oncologist and receive nitty gritty details of this season of our life.

At 11:30 we meet with the vascular surgeon who will explain even more details to us!

We will have a busy weekend of trying to finish up Christmas shopping, choir practices and Christmas musical, and a bit of fun for our kids hopefully, before chaos ensues.

Monday Zine will have an outpatient surgery where they place a central line!  Yes, he will then have a port and a central line.  Just sounds like a recipe for disaster to me!  But...we trust in the doctors making the decisions!!  And then after the line is placed he will have his first procedure with his blood of removing his attacker cells!!

Please pray that we would be able to process the needed details tomorrow.  And pray for our emotional stamina.

And really, for me (Karen), I don't think I have ever had a season in my life where I feel as alone as I do right now.  The aloneness is often very overwhelming.  I know there are a lot of people loving us and praying for us, but that doesn't remove the smothering aloneness I have felt the past several weeks.   I try the majority of the time to hold my head high and march on with life!  But I have my moments and the past few days, I have had  many moments!  But I am doing what I know to do, I am begging God for Him to do in my life what He desires to do in me!

As far as Zine, he is dreading yet another surgery.  But he is such a trooper.  I would complain loudly over and over again!  And he really doesn't!  On occasion, he will complain!  But when he has a plan and he knows what has to happen he is the best patient ever.  So that's where he is.  Dreading the surgery but resigned to this is the way it is and he just "wheels" forward!

Let the New Adventure begin!  An unknown Adventure, uncertain of the outcomes, and unsettling the insides.  Intimidating and scary.  Reminding ourselves to trust in the One who holds all the details of our lives in His hand!  And continuing to trust that our doctors are working for our best interest!

The Blue Day...rails, chairs, and days of wondering

I think for the current time my home is now the proud owner of the last pieces of medical equipment...at least for tonight anyway!!  Chloe spent some time with an OT today and she has appt on Thursday with a PT so there will be some more equipment coming but not tonight!!  There's a reason that Scripture says do not worry about tomorrow for today has enough worries of it's own.  

Our last rail was installed today in our bathroom!  Huge thanks to the two awesome guys who installed it for us.  Noel and Tracy are awesome!  Love them both tremendously!!  I have worked so hard to make my home accessible without it screaming a person with a handicap lives here!  I've done a very good job of that as well.  However, the pole by our bed and now the final rail in the bathroom...they both SCREAM that we have mobility issues here.   I have been in the bathroom three times and each time, there is a sick feeling that washes over me.  There is a part of me that is SOOOOOO very grateful for each piece of medical equipment that has entered our home over the past three months!  And I don't resent or regret these equipment purchases at all!!!  But sometimes things are such a visual reminder of life now!  I know that one day I am going to walk in my bathroom and it is just going to look normal.  But for today...it makes me sick and terribly sad!

Two new chairs....a new shower chair which you've heard about in the blog post about our little encounter at the hospital.   And then came the power chair.  I thought I was ready for the power chair.  I have had to help Zine so much lately and I could see him struggle to push himself often in his manual chair.  I could imagine all the possibilities of things that could now happen when he changed chairs.   I was pumped and couldn't wait until he got it!  Well, he got it last week!  And I quickly found out that I wasn't nearly as ready as I thought I was.   Although I have done my good wifely duties in encouraging him to use it and not be afraid of it, reminded him of all the things I had envisioned him being able to do, etc. on the inside everytime I see him in it, it produces an extreme sadness and grief.  Sunday was the first day we had been out together and him be in his chair.  I was definitely NOT ready for that!  I perfected my fake face for awhile and made the best of it.  Definitely didn't want to let my mask down one iota Sunday morning.  But it made me very sad! 

A week of wondering when this new treatment with his blood is going to start has also about been more than I can do!!  I like my calendar.  I like to know details.  I don't like just waiting and wondering.  But...I don't want to be an annoying family either.  So it is definitely a constant struggle to know what and when to contact and when to wait and remain silent.  We did hear some things on Friday.  They can't take his blood from his port.  So a central line is typically placed.  However, since he is on blood thinners they can't place the central line until he is off of blood thinners for a time period.  So we are not certain what is going to be done about that.  Still waiting for our marching orders!  So...since it has been a week...I decided to contact the neurologist office late this afternoon.  Got to talk to my favorite nurse  for which I was grateful.  She was like I HAVE NO CLUE!  She assured me she would try to get with Dr. L and find out what was going on and where that process had been halted.  So...we shall see if tomorrow is the day that brings some answers to this big thing hanging over our heads!!

Feeling very heavy hearted tonight!  If you've never read this book I would suggest it.  It's a great coffee table book!! It has definitely been a blue day book moment over and over and over for me the past few days!  You can watch it on YouTube as well.  http://youtu.be/RoJuhD_GnkQ

However, despite it being a blue day book, I am grateful that in the darkest moments that others do not see, God is in the midst of them bringing strength, comfort and peace.  I shared with a friend today about grief.  When we look forward we say we can't do it.  But when we look backwards I say there's no way we could have done things that we have done!  So I know it is only by God supplying each and every need that we have done those things.  And it will be by God supplying each and every need in the future that we will do those things as well!  So I am certain I have my head knowledge and heart knowledge correct.  But...sometimes...the heart has to grieve deeply because it loves deeply.  And tonight is one of those nights!

The Next Two Steps

Yes, I said two steps.  As I have said before, everything is up for change when you go see Dr. L.  He never ceases to amaze us with his knowledge, his care, and his desire to do everything he can for us.  But one thing I have learned is that I never go thinking I have a plan.  If I do, it will be all messed up for sure!!  So...although we had talked about the next step we didn't even begin to try to think we knew what the next step would be!

At our oncology appt two weeks ago, the oncologist brought up something that Zine nor I ever had heard of.  And we didn't share that information with anyone as we wanted to wait until we met with Dr. L.  As it turns out, Dr. L had mentioned it as an option before but Zine nor I neither one remembered.

In light of the fact that traditional methods nor chemo have worked, we will begin a procedure that is not done often in the United States.  We are in the waiting mode while doctors communicate with each other.  Zine's blood will be taken most likely from his port, it will be ran through machines and the cells that are attackers in his body, will be removed from his blood and then his blood will be given back to him.  Until we hear back from Dr. G at The Cancer Center we definitely do not know all the logistics.  But we do know Dr. L expects it to begin possibly as early as Monday.  Until just recently, this procedure has required a two week hospital stay but in the last year some doctors have begun to do this procedure outpatient.  We believe that this will be outpatient for us as well.  If it is outpatient, it will require us to go every other day for two weeks for this procedure to be completed.  But once again, we will not be certain of details until we have communication with Dr. G.  It was a blessing for us to have two very important doctors to agree that this was a great trial to see if it might help.  This does not treat the disease, but if it could help with some symptoms then that would be good!

Step number two is chemo!   Which one was the question?  We had our list of questions that we had developed as we researched.  And as always, Dr. L was very good to answer each of our questions and concerns.  The final decision...step two is that Zine will take a 5 day chemo.   He was scheduled to get this chemo in November but due to the blood clots, we missed it!  There is over a year long waiting list to get this drug.  However, we will not have to wait nearly that long.  We expect to have the weeklong treatment by February.  

We have come to understand that I am going to become very good friends with the nurses at Dr. L's office!!  This is a process and details will evolve on a daily/weekly basis as needed.  So although we like plans and dates on the calendar, this is one of those situations where we will have to walk through very loosely!  But we know for certain these are our next two steps and the logistics will be worked out as needed.

With the chemo, because of risks of autoimmunity, infusion reactions and some kinds of cancers, we will be put into a restricted program called the REMS program.  (Risk Evaluation and Mitigation Strategy)  This chemo is only available at a handful of locations across the United States and has only been approved in the past year.   We are very blessed that our dr was the first doctor in the US to administer this drug.  So although, it will require a week long stay at Cullman, it's not like it is forever away!  And we are able to get it with a doctor that we already have a relationship with.

Now as Dr. L stated, I don't want to give you any false hopes.  This drug nor the other chemo drug, that will follow a few months after this 5 day one, will come with any great amount of hope or research that it will change Zine's progressive disease.  The drug that came with the most hope, didn't work.  But these two things are the only things we have left to battle with.  And it is a battle.  We will expend all battle weapons that we have to fight with.  And this is part of the battle plan!  We fight not with a hope that these drugs will work.  However, we do fight with a hope that there is Great Physician that has the power to heal at any moment!  And we fight knowing, that even drugs that aren't expected to make a huge difference, that the Great Physician could choose to use one of those to bring His healing!  So the battle is worth fighting!  If we were old and our kids were grown, we might feel differently.  But for pete's sake...we have a 6 year old, a 15 year old, and a 17 year old!  The battle is worth fighting!

Thank you all so much for praying us through our day.  I have many details that I can share but those will have to come in future posts.  This does not even begin to touch the emotions or the relationships involved in these decisions.  I have just wanted to get an update of facts to you as it relates to our next steps.  And I feel bad that it has taken me this long.  But we were needed to be with our children as they process this information which is very difficult information to process.  We know beyond a shadow of doubt that we were prayed for all day!  Thank you!

Continue to pray as the next adventure of our lives unfold before us!  We are very tired!  We are pretty emotionally spent right now.   A simple hug from a friend brought tears to my eyes a few minutes ago.  An hour in a counseling office brought a dumb truck load of tears today!  But we are walking in complete confidence that our doctors and us have made the right choices and there is great peace that we are in the middle of God's plan for our lives at the current time.  That in no way makes this place an easy place, but we walk with a peace and confidence in the decisions and path ahead!

Thank you for journeying with us and we hope that even in this post you see the great struggle but also the great faith we have!  And may God use our words in the middle of your darkest struggle, that you would know there is still a hope and a faith in the One who loves and cares for us so much that He began our lives with a kiss a breath from his heart to ours!

Wednesday is a Big Day

We would love to have you join us in praying for our day tomorrow!  We will travel to Cullman and be there at 8:45 am in the morning for MRIs!    Zine has not had MRIs done in a bit over a year.  These will look at his lesions.  The eye dr is sure he has lesions across his brain stem.  We are totally certain that they will find more lesions than last time.  Way too many changes going on!  However, being certain and hearing someone tell you for certain are quite two different things!

We then meet with the neurologist later that afternoon.  Yes, we have several hours to kill between the appointments.   So...we are taking an unexpected little adventure.

We are taking all three children with us tomorrow!  We will do our school in the waiting room while Zine has MRIs done.  Then we are headed for some lunch out and fun family time.  Zine and I will return to doctors office and we will let Conner bring the girls back home and then head to church.  Conner's not driven from Cullman to our house before.  But we have great faith in his driving skills!  And talk about kids having to grow up fast...Conner has most certainly had to do that!

At the appointment with the neurologist we will be discussing information from the oncologist and comparing notes with neurologist.  We are praying for great wisdom on the next step.  We do know a different chemo is going to happen.  We have two more to try.  So the question is...which one do we try next.  That decision will be made tomorrow!  We think we know what that is...but...everything is always up for change when we walk into the neurologist office!

Whatever that decision, our lives are about to change again.  And everyone in this house struggles with change!  But we are walking confident in the promise that God will never leave us or forsake us.  God is always working His good in our lives  And lastly, it is when we are weak that His strength is made perfect.

Thanks for praying for us through this journey and especially as you pray for us through our day tomorrow.

A side note...Zine is adjusting well to his new wheels.  He's still not a proficient driver yet...but he's doing fantastic.  I think I've had a harder time than he has.  I had adjusted to seeing him in his manual chair but the power chair...it messes with my insides!!  That's just wrong to see your husband in a power chair!!!!  And...I am going to be totally lost and not know what to do not pushing him around.  I will have to find a new identity I'm afraid!!  :-)

Another side note....I came in this evening from picking Chloe up from art class to a laundry room with water in the floor.  My washer apparently decided it was ready to leak!  But you know, I didn't freak out, I didn't fall apart, I simply gathered towels, dried water, moved my washing machine out to dry water from underneath it.  It was a calm moment for me.  For that I'm grateful.  However, in moments like that, I really hate my hubby has MS!  I still remember the day, before we had iPads and smart phones, watching Zine walk from the study to the laundry room to the study to the laundry room. I finally asked him what he was doing and he said I am fixing the washing machine.  He was watching a video a section at a time, then going and fixing the washing machine!  And guess what...it has worked perfectly ever since!  But now...there's no Zine taking my washing machine apart!  I wonder...can I watch you tube videos and fix my washer??  I might be caught trying it this weekend!  But I'm not thinking about that stupid washing machine until we get through our day tomorrow.  First things first!!  And as I am going through my day tomorrow I will remember this scripture verse.  And I know I've posted it before, but there's a song that speaks to my heart often called We Will Not Be Shaken.