Back to Ohio we go

We are headed back to Nationwide Children's Hospital in Ohio.  I am taking both girls with me and we are driving this time.  I'm a bit nervous about such a trip by myself!  But...I'm growing up and learning to do things alone!  So..I'm sure we'll be just fine!  We will drive part of the way tomorrow and the rest on Monday!  We are staying again at our home away from home...the Ronald McDonald House.  Doctors appt is Tuesday morning.  It will take most all day to see all the doctors and get whatever done they want us to do!  And then if we are not needed for further testing, we will head home on Wednesday.  I hope to drive the entire way on Wednesday...but that's gonna be a hard day!!  But...I sure am hoping that my plan works out!!  However, I know it is my plan and God may have different plans.  But...I'm praying my plans are His plans!!  :o)

Conner will be here holding down the fort.  Since we do not have two accessible vehicles, he will be taxi driver for Zine to and from work!  It will be putting together wheelchair and taking apart wheelchair everytime.  Not going to be a lot of fun and it's going to be alot of work...but it's a plan to allow us to do everything we need to do with two different people who both need their wheelchairs!   I forsee in our very near future, some fundraising for a second accessible vehicle! 

I have been in a sprint the past two days trying to get things ready for my last week of school to pass off to my aide.  On top of keeping up with our Arkansas family that is trying to survive a massive flood, we are continuing to be slammed by a very stressful situation that continues to wreak havoc in our lives; in addition, there is normal life stuff like laundry, packing, etc.

As of 12:12 am, the girls are packed.  My school is uploading as I type this.  My laundry is done.  I think I can take a few deep breaths now!  Whew!!  I'm saving my packing until in the morning!  But we are in no hurry to leave so that will be fine!

Please pray for safety while we travel.  Pray for Zine and Conner that they will manage the stress here just fine!  And that they would have some sweet daddy son time.  Pray for continued wisdom on this doctor's part Chloe is to see.  I'm still holding my breath and saying my prayers that these numerous different things will eventually all be put under one umbrella!  Pray for Chloe and her emotional status while we are gone!  Pray that Krisann would be on her very best behavior.  And that we would have some sweet girl time together despite the reason for the trip!  And continue to pray for my family in Arkansas who are trying to survive a flood!

I shared this picture in our update from our first trip to Ohio.  But just wanted to share this quote again.  With literal flooding, I always think of rainbows!  And my family is in the middle of a HUGE storm of life!  So, a little reminder to look for the rainbows that come after the storm!

Keep on keepin' on

Most of my teacher friends have now finished teaching and are enjoying their summer.  I keep reminding myself that they are going back to work while I still have a couple of weeks left.  But every year at this time, I get a bit jealous!  I told my students today that my brain was mush!!  And it indeed seems like mush! Finishing up my last two weeks of school.  Next week should be my fun, enjoy my students week.  Get to let my creativity shine during that time.  However, I will spend next week in Columbus, Ohio taking Chloe back to see this famous doctor!  So I will miss my fun week with my students.  And will have to really work on things my sub can do instead of how much fun I can have!  I have no words for how bummed I am about that.  I will make it home late Wednesday night and will be exceptionally tired but will spend my last day with my students next Thursday.

I am looking forward to some down time for sure!  But I'm worried about my down time as well.  My work has been my escape.  If I have gotten upset, then I just go get on my computer and work!  If my emotions are getting the best of me, I can put them aside because I have work to do.  I'm quite fearful that I may have a hard time emotionally once the pressure of school work is removed from my shoulders.  But as I feel my insides getting churned up, I remind myself that it will just be another lesson in keep on keepin' on.

A little secret about me...I've always wanted a tatoo!  Except...I'm exceptionally afraid of needles and pain.  So...therefore I've never been tempted to go get one.  But...I saw this picture and thought, I need that tatoo!

That's how I can summarize life right now...Keep on keepin' on!  And I feel very guilty about that thought process.  I want to do more than keep on keepin' on!  I want life to be beautiful!  I want things to be good!  I want family vacations to happen!   I want MS to be healed.  I want an emotionally healthy family!  I want my mama to hug me again and have a real conversation with me where I see her big heart!  I want a lot of things and I always feel guilty about the keep on keepin' on mentality.  But let's be real...everyone finds themselves in modes of just keep on keepin' on!  And I have decided that instead of having to feel guilty about that mentality, that God is proud of that attitude.  Life is sometimes hard!  But our job is to keep on keepin' on. 

Keep on believing God for miracles.
Keep on knowing that God is in control.
Keep on trusting that God is working His plans out for your life.
Keep on loving God and loving others!
Keep on getting up and facing whatever the day has to offer! 
Keep on relying on His power to carry you through difficult situations.

When I can look at in that perspective, I don't think there is anything to feel guilty about keep on keepin' on.   I think God is pleased with that perspective.  Now if I can turn my faulty guilt ridden thoughts around and believe them...that is the difficult part. 

A Difficult Five Year Anniversary

Five years ago, a neurologist delivered the news to us that Zine had MS.  And unfortunately, he most likely had Primary Progressive MS.  At the time, we just felt numb.  I remember sitting in Little Rosie's right after that news was delivered with our friends Rich and Lisa and just sitting.  There were no tears.  There was only numbness!  We definitely did NOT understand what we had in store for us. 

Five years ago, Zine didn't even need a cane.  He walked with a limp...that's all.  Five years ago, Zine didn't need a cath!  Five years ago, Zine didn't take chemo.  Five years ago, Zine was healthy and happy.  Five years ago, we were planning a family vacation.  Five years ago, our family was emotionally healthy and happy.  Five years ago, Zine had a full career ahead of him.  Five years ago, our lives were focused on loving and serving others. 

Today Zine needs a wheelchair to get around.  Today Zine has a permanent cath that has to be replaced monthly. (Not so permanent huh?)   Today Zine has taken numerous drugs and none of them have helped his MS at all including the current chemo.  Today a family vacation is like one of the most difficult things we can do!  Today the emotional toll that has wrecked our family is sometimes unbearable.  Many people in our home struggle with anxiety and depression today. Today, Zine is in an exceptionally stressful job situation knowing that his days to be able to work are limited.  Today our lives are focused so often on how others love and serve us.  So many changes!!  And they all seem so unfair!

Right now, I think being clueless five years ago was a definite blessing!  IF we had had goggles to see where we are today, we would say there was NO way we could do this!  But as I told someone earlier today, I am positive that there is a billboard somewhere that says God's grace and strength is sufficient for each and everyday.  And on that billboard you will find our pictures.  We are living testimonies that God's grace is sufficient.  We could have never done all that we have done without His grace and strength.

As we are waiting on a doctors appt in couple of weeks to determine our next course of action, in light of the fact, that chemo is not working...it is in someways a blessing to be clueless once again about what the next five years will bring.  We do have lots of questions, uncertainities and fears about the next five years.  But I'm pretty certain that if we were able to put goggles on and see the future we would be certain that we could not do what was in store for us.  And even as I wrestle with that very thought as I write this, I have to be reminded that God's strength and grace will be enough for each of those situations. Just as His strength and grace has been sufficient the past five years.

Never fear, I assure you we are not always beautiful around here in our thought patterns!  I think sometimes we write the best thoughts out there for you to read!  Someone said the other day, you seem to be so open on your blog!  I didn't have the heart to say how much I filtered and how many times I read and deleted before putting it out there!!  :o)   If we could erase the past five years from our lives, I'm pretty sure we would in a heartbeat!!  Maybe one day, we will be grateful for the things God has taken us through! I'm actually waiting patiently for God to take me to that place.  Just haven't arrived there yet!

We are grateful that in our weakness God is strength.  But we would rather Him demonstrate His strength in our lives in other ways! Like couldn't God send us to the jungles of Africa and rescue children from poverty?  That would be Him showing His strength thru us!!  Right??  I know though...we don't get to choose!

So...we do what we must do...we choose to get up each day...and move forward to the best of our ability. And we continue to be a living testimony that our human bodies and hearts are weak!  I used to sing a song with  my daddy, "His strength is perfect when our strength is gone.  He'll carry us when we can't carry on!  Raised in His power, the weak become strong.  His strength is perfect!  His strength is perfect!"  Little did I know that all those years of singing that song with my daddy that God was preparing me to be His living testimony to those very words!  God is strong!  And He does carry us when we can't carry on!  And for that, I am forever grateful!

Benign Tumor

On March 10, 2011 I remember hearing the news that I had a benign tumor.  I had gone in for a routine mammogram a couple of days earlier only to be called back on a Sunday night with a request for me to return for a second mammogram the next morning.  Nurse assured me it was no big deal.  However, as Monday progressed I went from a second mammogram, to an ultrasound, to a biopsy all in a matter of just a couple of hours.    On March 10 though, I heard the words your tumor is benign!  If I hadn't hurt so bad and felt so rotten, I may have relished in that fact a bit more.  I do remember feeling relief at the news!  Breast cancer was the last thing we needed!  But I felt so terrible I don't think I appreciated those words at the time as much as I do now.

Today May 13, 2015, I heard that my daughter's tumor was benign.  Although, I had nothing left in me to worry too much over this...I did find a bit of relief once again.  But then something happened, we were having a bite of dinner and I heard her tell her friend, I don't have cancer.    At that particular moment, the reality of what we have had hanging over our heads overwhelmed me.  I think with our mouths, we had said we are not that worried.  But I don't think I realized the impact it was playing in our hearts despite what our mouths said.  When I heard Chloe say those words, I truly think my heart skipped about 10 beats!  WOW!  What a burden to carry for a 14 year old.  And how sorrowful I was that simply due to the many stresses in our lives, that stress I tried to push away as no big deal.  It was a big deal to my 14 year old!  And I may have missed caring for her heart as much as I should have!

But I did try to entertain her today with lots of selfies!!  Definitely tried to help with some of that nervous energy!

One of the things I am thankful for everyday that in the midst of our stressed lives and craziness, that God has sent people to love my children in the moments and times that I might not be able to.  Each one of our children have a special person that spends time with them and loves them.  I am forever grateful for these individuals and am so glad that they have followed God's prompting to love and pour into my children.  In our lives right now, it literally takes a village to raise my children!  :o)  Krisann loves her Mrs. Amanda.  Chloe loves her Mrs. Allison.  And Conner loves his Mr. Will.  The only words I can say is from the depths of my heart--thank you for pouring into my children and loving them well!

After my heart started beating again, I was quickly reminded of so many of those that didn't hear the word benign.  Reminded of those 2 year olds and those 14 year olds that hear you have cancer.  Oh how my heart broke in that moment for those children!  And for their parents.  And for the doctors and nurses that care for them.  I was honored in that moment and in moments to come to pray for them with a new perspective.  I know what it is like to receive bad medical news.  I've been in those shoes.  But I also know what it is like to hear the word benign and the relief it brings.  I could have just as easily heard the word malignant today!  But I definitely have a new perspective on what families with cancer go through!  I know what it is like to live with chemo.  And I know the stress of waiting on pathology reports.  And tonight I'm so thankful that I know what it means to hear the word benign!

Pathology Report Tomorrow

Tomorrow afternoon we will receive the pathology reports on Chloe's tumor that was removed.  For the first time this evening, I have begun to think about it and feel apprehensive.  But since her surgery, we have had so much stress in our lives that worrying about a pathology report was at the bottom.  Friends came over last night and they had to laugh at that concept.  They were like this is really sad that this is at the bottom of your stress list!  We literally have been under an insurmountable amount of stress. 

We have had a situation that has consumed us for almost 2 weeks now.  It is a situation that seems to evolve and change on a daily basis.  It has required us to seek wisdom from others as we had NO clue how to handle things.  It has required us to simply trust!  In a conversation early one morning as Zine and I discussed options and heartaches, I just had to say...I share the same fears and the same concerns you do.  We're in this together.  But I keep coming back to the thought that God sees and He knows.  We just have the opportunity to trust God at a deeper level than most people ever get the opportunity.  But even so, trust is hard.  Or at least trust is hard for me!

Trusting God for healing for Zine.
Trusting God for good pathology report.
Trusting God for chemo to work.
Trusting God for financial reasons.
Trusting God for those that are guiding our paths right now.
Trusting God that His plan is to prosper us and not to harm us.
Trusting God for Chloe's next appt in Ohio in 3 weeks. 
Trusting God in the unknown that evolves and changes everyday.
Trusting God...the list continues.  And it's not a small list.  It's a big list!  And for me, trusting is hard.

I hear God say all the time...I have a plan, do you trust me.  And I so often answer that question...Yes, but....

Oh how I wish my heart trusted easily.  How I wish I answered this question with a resounding yes.  This is definitely something God is working in my life!   And I do believe in the long run it will be worth everything.  But in the meantime,these trust issues are painful!

Say prayers for us tomorrow as our appointment is not until late afternoon.  Please pray that Chloe (and I) could trust God!  That we could trust God with her anxiety.  That we could trust God with the what ifs.  That we could trust God's word.  That we could trust God's love and care.  Simply put...that we could trust with no buts!

Recovering from chemo

This round of chemo was a lot harder for Zine.  He was ALOT more tired.  He literally slept almost non stop for 48 hours.  His fever was concerning but thank goodness he typically runs a lower than normal body temperature or else we would have been at the hospital!!  But we managed to hang on!!  His nausea was controlled with medicine.  For that we are very grateful.  We are discovering there are some things that are the same about each treatment.  But then there are other things that have been different every time.  So just because it's not new anymore, it seems we can never predict what that crazy drug is going to do.

He will enjoy a few days this week of feeling better but by the end of the week, his blood counts will be dropping and he will start feeling really tired again!  So don't let the couple of good days trick you!!  Even for us, it's so hard when we get a few days to remember it's only a few days!!   And when his blood counts drop, crazy things start happening at night!  At first he didn't believe me...but now he does!!  If I start talking to him and engaging him, then he will wake up and kinda remember the next morning.  Someone asked me what crazy things happen??  Well, here are some examples...

• He removes books off the bookshelf in the middle of the night because he is looking for his covers.
• He rummages through his walker basket and wheelchair seat looking for needles.  When asked what kind of needles he replies the ones with drugs in them.  LOL!!  He was remembering when he gave himself daily injections.
• He is always trying to get up and go somewhere or do something.  And he has a good reason for whatever it is to get out of bed.
• He is always fiddling with his catheter bag and moving it around.  One unfortunate night, he somehow unplugged his bag so the contents of the bag for the entire night soaked into our bedroom carpet.  Yes, this was by far the worst extravaganza we have had. 

If people saw what happened and heard the conversations that ensued between he and I in the middle of the night, I'm certain that you would laugh hysterically.  Even we laugh at the adventures!!  I've always heard the saying sometimes you laugh instead of cry.  Well, this is one of those!  Notice, we only write these things after they are said and done!  Sometimes in the middle of them, they are not easy to write about!


So...we will enjoy a few decent days...before blood counts drop and we enter the season of crazy nights and no sleep! Thanks for joining us on our journey!  And thanks for praying for us. 

Chemo #3

As I have shared we have some major stresses going on that has just about wiped us out emotionally.  When people who have MS get stressed, it makes their MS much much worse.  So Zine's body physically and emotionally have just about shut down prior to chemo.  And then yesterday we added chemo to the body.  So his body is really a wreck right now!

We spent almost an entire day at The Cancer Center yesterday.  We had a very somber doctors appt yesterday.  We almost didn't get chemo yesterday.  The oncologist doesn't think the chemo is working.  He wants us to seriously converse with our neruologist about whether we continue with this particular chemo drug or not.  So we have appt to see neurologist in a few weeks.  And I assume at that time our plan will be different yet again!  Thank goodness I have finally gotten to the point to realize, there is no definite plan.  It is always changing and until God chooses to heal, there will always be something going on!  That has actually helped me a lot!  There's no check boxes to check off and then you're done!  Nope...it's a list that is always changing!

By last night, Zine and I could hardly function.  Exhausted physcially and emotionally!  We did something we never do!  We both took today off.  And we have simply tried to take some time to breathe!  It's been a day at home with the family and several friends have been by for various reasons.  I am truly amazed at how many people are loving us through various ways.  House cleaning, yard work, dinners, texts, drop in visits.  We are blessed in this mess by others loving on us!  Thank you!  And a day off today to be at home and breathe has been a blessing as well. 

About 3/4 through Zine's chemo treatment, all color leaves his face!  I call him my white boy!!  But it totally breaks my heart when he looks so sick.  So today he is not any better.  He's definitely still my white boy!!  No olive skin for him!  His nausea is controlled with meds today!  Thank you Jesus!  He has had a headache on and off yesterday and today.  His eyes have burned and he has had a very low grade fever.  Not enough to worry about but definitely a low grade fever for him.  I will continue to keep a close check on his fever!  He is EXCEPTIONALLY tired.  Moving from the sofa to the bathroom takes about every ounce of energy he has.  And the really bad part...it seems we are going through this for nothing!  At what point does one just quit fighting with drugs and let the disease run its course?  Definitely a question that we have contemplated a lot! 

Thank you for covering us in prayers!  Please continue to intercede on our behalf. 

Overwhelmed and Exhausted

We have been through a lot of stuff in our lives!  And there have been times that we felt overwhelmed.  However, I can be very certain...none of those overwhelming moments compare to where we have been for over a week.  I honestly do not know how much longer we can hold out doing what we are doing.  But...I don't know what the other side of this brings either.  I have no words for what is going on in our lives.  The only words I can manage to come up with are hopeless and terrified!

I'm comforted to know that when we don't know what to say we can simply speak the name of Jesus.  That's where we've been.  Can't utter prayers because we can't collect our thoughts enough to turn them into prayers.  But we can speak the name of Jesus.

Right now it doesn't feel like He is at work in our lives.  But He's gotta be. 

I can't share details now.  But please pray that God would give us wisdom, comfort, and rest.

Survived Surgery

It has been a long day but we have survived!  Sometimes don't you  just want an award for surviving a day??

As a mom, one of my hardest jobs is watching my children be scared!  And I had my share of that today!  We arrived right on time at the Surgery Center.  Everything worked quickly and efficiently.  Breezed right through registration easily.  Got into pre op with CHloe.  She had to have not one but two IVs.  She had one in her right arm and one in her left hand.  Poor girl!!  But she's such a trooper when it comes to things like that.

Then the anesthesiologist came in and began to talk and the more he talked the more Chloe got upset.  I could see it all over her face.  She gets this look in her eyes and then she looks at me!  A tear is on the edge of her eye.  And the moment he walked out, she was falling apart.  I'm scared she voiced with numerous tears.  So I kept telling her she was going to be okay.  I did request some medicine to help her calm down a bit.  And that helped a lot!  It didn't make her go to sleep but it definitely helped her settle down and chill a little bit.

Nothing was making her smile though.  Not even our pastor singing her lullabies really got her very excited!!  We ended up having to wait for a bit for surgery.  I finally went out and asked how much longer and they told me another hour.  I was very nice but told them we couldn't wait that long without more chill medicine.  So we had waited long enough for the first med to begin to wear off.  I'm not exactly sure what happened but instead of bringing her more medicine they came and took her to surgery!  I just breathed a BIG thank you to Jesus.  I'm not sure I could have made it another hour.

She didn't cry when they took her.  But she was very scared!

And once she went to surgery, everything moved VERY quickly!  We had not worried about it at all.  The doctor had told us he thought it was a cyst.  But upon removal, he shared with us it was not a cyst.  He gave us the name of the type of tumor he thought it was and that he was sending it to pathology.  I have lots of questions now but at the time, I couldn't even really think.  My brain was still processing those two big words he said.

Got her home and she has been in bed all evening.  She got up long enough to eat some baked potato.  She was very restless and hurting until about 8:30 but about 8:30 she settled down.  I'm about to go wake her and give her another dose of pain med and nausea med and hopefully she will sleep through the night!

Krisann has been taking very good care of her!  Krisann is rubbing the massager on Chloe's back in this picture.  She's also taken art stuff and colored sitting beside Chloe!  She's also been a bit jealous of the attention that Chloe has gotten!  It's been kinda funny to watch and listen the the jealousy come out!  So I will definitely be trying to give her some attention as well as Chloe!

Several people have asked how I held up...I think I did well considering.  I had tears come to my eyes a few times but never down my cheeks.  If I had lost it, Chloe would have REALLY lost it.  So it was important for me to keep it together.  Hard....YES!!  But I did!   I had some great friends that came!   This picture makes me laugh!!

I told them I was going to post it on facebook and say some kind of friends they were!  I think I embarrassed them and made them feel bad!  They both were doing much needed texts!  And it was only for a split second but it was enough to give me a chuckle!  I was NOT offended at all!!  Just funny!!  But truly, I can't say how thankful I am for Lisa who came and spent the ENTIRE afternoon with me at the hospital.  And for our pastor who popped in and worked hard at singing lullabies to Chloe (LOL!) and praying away major anxiety!  These two were awesome today!  So grateful to be loved by friends and pastors!

For right now, I think I'm just walking around in a surreal world.  There is no way all this can be going on at one time in our lives!  But...it is.  I just think I haven't fully accepted that it is all real!  Sometimes that's just God way of protecting us!

Now...we will wait for pathology report to come in!  Just going to continue to pray that it is benign and that's the end of this unexpected excursion in our lives!  Off to give the girls some meds!!

Thanks for all of you who prayed for us today.  I very much appreciate it!