Drug Dilemna

As I shared a video in the post Ummmm.....what happened? we have been working on Chloe's medicines.   This particular post shows a video of Chloe struggling after we upped some of her new medicine.  Well, what we didn't force happening after that was the wreck it caused in her emotional state!  And I missed the fact that the emotional state was related to medicine.  I spent almost two weeks pulling out all counseling tips, lots of prayers, much frustration, and complete exasperation before taking her to the psychologist and counselor.  The result of those visits was there was nothing I could do nor she could do to fix it.  An email to the doctor was in order.  Sure enough, that drug can affect your central nervous system.  That explained her headaches and every negative emotion than one could possibly imagine.   So that has led us to slowly take away this medicine.  After reducing the drug, within 48 hours we saw an improvement in her emotional state.  So over the past week, we have been working at getting her off this particular drug.  Every time we reduce it, she is basically sick for about 24 to 48 hours.  This makes us sad to take her off the drug.  Physically, she had improved greatly!  I could look at her and know she was feeling good!  I saw her playing and moving around much more than she ever has.  Now...I look at her and I can tell she is back to hurting and in general feeling bad.

So the dilemma is to be sick physically or to be sick emotionally!  We all have made the same choice...we would rather Chloe be sick physically than emotionally.  Actually, we would rather her not be sick at all!!  But if we have to choose...we would much prefer her to be as healthy emotionally as she can!  But...it makes this mama sad to have seen her feel so good physically and then just crash emotionally.

She visited her local neurologist last week who educated us on a Baclofen pump.  And she also introduced us to the idea of pain management doctors.  Talk about making reality set in...this definitely did it.  So an email was then sent to her doctor in Ohio.  And then all of a sudden, our trip to Ohio in October has been lengthened.  She will now see several new doctors while we are there.  We definitely don't know what to expect.  But we do know that she and I both share some anxiety over those appointments.  Will their recommendation be a baclofen pump?  Will they want to try different medicines with the possibility of causing more emotional trauma?!  I don't think we have any way to predict!

What I am reminded when I think and try to comprehend all this, the future is uncertain.  Our October trip to specialists come with a lot of uncertainty.   However, I am further reminded that even amidst this, God is unchangeable!  God is still God.  God is still our strength.  God is still working His plans in our lives.  God is still for us, not against us.  God still desires to prosper and not to harm. God is still meeting our needs!

So why fret and worry over this appointment when God is unchangeable?

Well, I think I'm human!  And I'm a mom!  I can put my trust in an unchangeable God and have faith in all those traits of who God is.  But right beside that faith and trust, is a mommy heart that struggles when her child struggles.  A mama heart that doesn't want her child to have to be full of anxiety.  A mama heart that wants her child to be healthy both physically and emotionally.  A mama heart that wants to protect her child from what the future might hold.  A mama heart that does not like her girl to be sick.  A mama heart that loves deeply!  And when we love deeply, our hearts are tender for those we love!

I beat myself up often for having uncertain feelings about upcoming appointments.  Once again, I think if I were a good Christian I would not struggle or be concerned over appointments such as these because my faith should be strong enough to carry me through.  But what I am beginning to understand is that it has less to do with my faith and more to do with a heart that loves!

So as much as I would like to say I am okay with whatever happens over the next few months as we play with more medicine trials and educate ourselves on baclofen pumps, I can't.  Because after all, I have a mama heart that loves deeply!  But right alongside that troubled heart, I have full confidence that God will continue to be God in our lives!  He is unchanging!  And yes, the two of those concepts can reside side by side!

How Others Have Changed our Lives

In November 2014, a routine visit to Zine's neurologist sent our lives into a tail spin.  For several days, we could get no words out!  It took three or four days before we even talked to my family on the phone.

Right after putting a Facebook update out,  I received a message from Linda that asked if we needed some meals.  I assured her I didn't know what we needed but I thought we were fine.  To which she responded, I would like to bring you a meal and I think for a few days that would be beneficial.  And within minutes, she had set up a meal calendar for my family.  What I didn't know was that my mind was not sharp enough to conquer any task.  Much less an entire dinner. For weeks, my mind didn't function.  Here we are 7 months later and it is still struggling to keep everything straight.  For months, our church provided meals 3 days a week.  And it WAS a blessing!  And....they continue to provide meals during chemo months!  And we are very grateful!!

Our pastor heard and called us and we couldn't get any words out.  Tried but no words came!  He finally said, let me pray for you and with tears rolling and no words from us, he prayed.  Today, we have no clue what he prayed!  But we know he prayed.  We had elders and their wives come and pray for us.  We don't know what they prayed for, but we know they prayed!  We had friends come and pray with us!  Once again, grateful!

Three days later, we were still walking in a complete fog and brains were still complete mush, Londa texted and said are you home this morning.  My response as usual...no we have to go to the Eye Glasses store and get Zine's glasses ordered.  Because at this time in our lives, why would a Saturday  morning be any different than others.  Doctors appts were consuming our lives.  Londa said leave your door open I'm coming to clean your house.  What she didn't know was that there was junk everywhere!!!!  But while we were away, she collected all my junk and organized it into piles and when we returned, my home felt much more put together.  Blessed!!  We needed something that felt put together!  Once again, grateful!

Our pastor and worship pastors' wives came and visited.  They had an entire list of things that might bless us.  Sweet Lesley finally said you don't have to say anything just give us a thumbs up or a thumbs down if it is something that might bless you.  They made it as easy as possible.  From that conversation has come grocery gift cards, dining out gift cards, crockpot dinners and freezer meals!  Once again, grateful!  Grateful not only for the many many people who have blessed us, but also for the sensitivity of my friends to know we are not good at receiving!

Ladies have taken Chloe for allergy shots!   Not only has that been a huge blessing for my schedule, but it has allowed others to love on my sweet Chloe!!  Very grateful!

My first anxiety attack came shortly after that doctors appt.  A sweet couple came and visited and simply were the mouthpiece of several couples who had joined together.  They had hired someone to come every other week and clean my house.  Dumbfounded and overwhelmed!  This one took me awhile to receive gratefully.   It stretched me beyond compare.  But even though I felt uncomortable we were still blessed and grateful!!

People in our church have taken on the role of loving and mentoring our children.  Will and Conner meet weekly for coffee!  And I think this might be a safe place Conner might can share his inner feelings.  I think his walls are tall and thick like his mama's!  Allison takes Chloe for steak and ice cream on regular basis.  Allison gets many text messages from Chloe, and always loves and responds to her.  Amanda has loved Krisann and even schooled her two days a week for me!  This we are definitely forever grateful for!  Some neighbors hire them for dog sitting, yard work, etc.  And it keeps the big kids well funded for sure!  Grateful!!

Yard work...oh yes...my neighbor mows my front and side yards every time he mows his!  We've had friends come and weed our flowerbeds, mow our yard, work on lawn mowers, etc.  I had a young man come and spend an entire day with Conner and repaired my fence outside!  Grateful yet again!

Monetary donations...we had a friend send us a Christmas gift!  Very unexpected!  But that Christmas gift was a huge blessing!  We had a neighbor who shared a monetary gift with us!  We've had a couple of Sunday School classes at various times choose to bless us with a monetary gift.  With medical expenses so expensive that many of you cannot even comprehend, it has definitely been a blessing!  Once again, grateful!!

Chemo...only one time have we done chemo just the two of us.  And that time was LONG and stressful!  We have been so blessed that some friends have joined us all the other times.  Nothing anyone can do but it is so nice to have someone there that talks to us and helps us pass the time thinking about other things than chemo running through the veins.

In December, Zine had two surgeries in one week!  I never once sat alone through those!  A friend stopped by and brought bagels early one morning!  One friend came and sat with me for both surgeries.  Our pastor loved and held me up during that week!  During one of those surgeries Londa once again said let me help you get your Christmas put together.  So she began to make a list and did just that!

Did I say Christmas?  Oh yes, there was a secret Santa in the church parking lot with gifts.  I still don't know who was responsible for the huge love gift but it was a blessing in numerous ways.  There was a lot of learning about how much God loves us through those gifts.  Also,  it made our first Christmas away from family very sweet and less lonely for us!

A small group of men have laid hands on and prayed for Zine on more than one occasion.  There's a group of ladies who have agreed to go to counseling sessions with me...they gotta love me to endure that!

I'm sure this list is not everything!  But we have been blessed and loved on well!  Zine says all the time, these people are going to get tired of loving on us because we are in for a long road ahead!  But for some reason, I think we have some people that are going to hang with us on this long road!  So very grateful!

If you've ever wondered how to minister to someone in crisis situations, I hope this list might have helped.  But from my perspective of one who loves to give and one who just found themselves in the receiving mode, there's no wrong way to minister.  I can't think of one thing that someone has done that I said, that was a bad idea!  Or...well...that was nice but it didn't bless me....nope not words that have escaped my mouth or even entered my thoughts!  We have been nothing but blessed beyond measure!  But I will say, receiving is hard!  For me it's MUCH easier to give than receive.  I think when I get this receiving thing all figured out and become comfortable with receiving, it might just make me an even better giver!  (At least that's what Heather tells me and I'm choosing to believe her!)

Thank you to those who have ministered to us over the past several months!  You have changed our lives forever!  God is working in our lives and you are a part of that work...thank you!

Big Weeks Ahead...Can We Just Quit?

We have had a situation going on in our lives that we have not written about!  For more than one reason, we have chosen not to write about it.  However, this week will mark 90 days from when we were totally dealt another difficult card in life.

At times this situation has consumed us.  It has caused us to do much research.  It has caused us to do some things that are way out of our comfort zone.  It has caused uncountable amount of tears to flow from our eyes.  It has been the recipient of many, many not nice words from our mouths!  (Yep, we're not perfect!)  It has produced much anxiety for everyone in our family.  On the 23rd, 90 days will have passed.  There will be one of two outcomes at that point.  And there is no way for us to predict what that outcome will be.  So literally, we are having to trust Jesus for each and every moment!

I would love to say that we are not worried at all about what this week brings.  But as we get closer and closer, it becomes more and more consuming!  And when things consume, it is hard for me to function.  And Zine becomes more withdrawn as he becomes consumed.   Please join us in praying that God would provide us much grace this week!  Anxiety can definitely soar in stressful times!    Pray that God would work His plan in our lives this week!  Pray that we would be able to trust in Him that He is working all things together for our good!

Chloe has been struggling immensely!  We decreased some of her medicine yesterday that we suspect is causing many many emotional issues.  However, with that decrease brought back some pain.  So as we come off this medicine, her pain will continue to increase.  She is SOOOOO tired of trying medicine!  I think she's just resigned herself that she would rather live with pain than to continue trying different medicines all in an effort to help!

As a mom, it is heart wrenching to watch your child sit with their face buried between their knees to cry and say I am so done.  I can't do this anymore.  I don't want any more medicine.  I am so tired of feeling this way.  As a mom, I've been exhausted knowing how to respond to her.   When she has a completely different personality, it's like having a stranger reside in my home.  It's terrible for all of us but especially for her and me!  I am so thankful for Conner this past week as he has been able to help her work through several many anxiety attacks!  He's so good when she's struggling and she really responds to him too!  Please pray with us that by decreasing her medicine that her emotional status will get better quickly!  Pray also for her pain levels.  And pray for our doctors!  She sees her local neurologist tomorrow!

I have also stepped way out of my comfort zone and agreed to some major counseling sessions.  I had my first one and I was terribly nervous.  My entire body was shaking like I was having a chill!  I don't know why I find it so hard to share my feelings with other people.  I can tell you facts all day long!  But when you go a step further and ask how I feel or what's going on inside of me, I'm done!  I'd much rather tell you I'm fine.  Or my best answer ever is life is difficult but God's grace is sufficient.  That's quite the cop out answer...but it SURE sounds good and it is a true statement just doesn't reveal what's going on inside of me!  That first session was one of the hardest things I've done in a LONG time.  Well, next week I have another one of those get togethers!  I am totally convinced it is the right thing to do and God is going to grow me tremendously through his process.  But...it is quite nerve wrecking for me!  I know it will get easier and easier and God is going to grow and stretch me.  But between now and the improved me evolves...it's VERY hard.

That's not all...chemo is returning in two weeks!   Sometimes I want to ask, can we just quit?  Do we have to do this?  I know the answer.  We have to do this.  It is the path that God has laid out before us.  But I think I may have a glimpse of what Jesus felt like when He asked "if it be possible let this cup pass from me".  So I know that God's grace is sufficient and I know His strength is made perfect in my weakness!  But sometimes my human side shows and I say...Can we quit?  Nope...can't quit.  But we can ask that God would provide us His grace and His strength over the next few weeks!  God already knows what 90 days brings, He already knows if medicine change is going to help Chloe's emotions, He already knows everything about my counseling session and God already knows what side effects chemo will bring!  Our job is to rely on His grace and His strength as we navigate life these next few weeks!

What We've Been Up To

It has been so busy I have barely had time to think.  This is our little lull between chemo treatments.  Blood counts are back up so we've had a couple of weeks of "normal" life.  Whatever normal is...I'm not even sure!  But this has been our time to get several many appointments in that "normal" people have.  Things like dentist appointments seem to get pushed to the back burner and aren't that important in the big picture.  But when you have so much going on, it's the normal that goes away.  So grateful for a few weeks to have normal appointments.  Never worry that we are too normal, because there was still an appt. at The Cancer Center and a cath tube change.  So, we've still had the not normal going on, just less frequent.

We have had a rough week this week for Chloe.  Living with depression just stinks.  She has wore me right out.  There has been personality changes, tears galore, a lot of anxiety, identity issues, very agitated, and emotional on all levels.  I had studied and asked questions all week long and just couldn't make sense of this depression episode.  Last night in desperation, I sat down on her bed and told her that I was done!  I had no clue what to even say or do!  And as a mom, I hate hate hate to be at that point of desperation.   She had two appointments today with two wonderful people that could help us try to figure her emotional status out.   Today I took her to the psychiatrist and to counseling.   The results of those visits...it seems that there may be a cause to all these emotional symptoms and that is the medicine that we have her on that is helping with pain.  It's the one that made her to where she couldn't walk.  Well, it seems that these emotional issues she is experiencing could very likely be caused by medication!  Here I have spent all week using the many hours of counseling I have had to try to make sense of what we were seeing emotionally.  Not once, did I ever think about it being medicine related.  Tomorrow, I will be in contact with the doctor in Ohio.  As of right now, I've had it with medicines!  Somehow, her medicine is making me crazy!  That's not quite fair!

Zine continues to have decent days and bad days.   Yesterday, he just had a difficult day emotionally.  But today has been better than yesterday for him emotionally!  His physical health continues to decline.  His back is hurting him some.  I think it is probably time to throw the walker away and go straight to a chair.  But...he's fighting that one hard!!  But one thing he doesn't have a problem with...sleeping!  So at any given moment you might find him asleep!

Going to continue to focus this weekend and next week on getting organized and I think we are about to go back to school routine very soon!!  Two weeks before chemo so I must make them productive!!

Ummm...what happened?

Just a glimpse of the things we live with all the time.  You never know what your day will hold.  Chloe wasn't at her best last night.  Feeling very tired and emotional.  But what happened this morning was not what anyone expected.  I get this text message that says mom I can't walk.  Huh?  What do you mean you can't walk?  And really she meant...she couldn't walk.  

Ummm...what happend?

One of the bad parts of having a child that struggles with anxiety and that is as a mom you must learn to show like no emotion.  If I had allowed her to believe for a moment that I was concerned, she surely would have thought she was going to die in 5 minutes.  Trust me, we're not speaking negatively of Chloe.  She will tell you the same thing.  Living with anxiety and depression is just a terrible thing!

We have been having days where Chloe doesn't walk very well, and that is part of the disease.  But then it seems that Chloe will perk back up and not be bothered for awhile.  She is constantly stretching her leg muscles to keep them working for as long as possible.  But this morning, it was far worse than I had ever seen.  It just seemed a bit odd to me that you can go to bed just fine and wake up and not move.  Hmmm....what's a mom to do?

I wasn't really scared.  But a bit concerned because I wasn't sure what was going on.  So I simply told Chloe I thought it was related to some medicine we had just changed.  We are in the process of weaning her on one type of medicine with the hopes to reduce some of her other medicine to see if that helps her movement disorder all while trying to get Chloe to where she does not hurt.  Yes, I know that sentence was long and crazy.  Welcome to my world!

I took a little video and continued to encourage her to just try to move around and see if she couldn't work the tightness out!  Stretch those muscles.  Go clean your room....I'm sure that will help you loosen up!  But there was still this little uneasiness in me.  So I emailed the video to her doctor in Ohio.  The mom, who just said go clean your room I'm sure that will help you loosen up, sent an email to the doctor with the subject line HELP!!!  

Within an hour or so I had a response.  I could have never got our local doctors to respond that quickly.  The pediatrician is not even that fast most of the time!  I am now sold on the doctors and hospital in Ohio!  We are definitely in good hands there!  And even more so, when the doctor responded the first two sentences were thanks for sending the video and then how scary to not know what's going on.  I love how before they even gave their medical opinion they validated my concern.  But then the doctor went on to say with great confidence what Chloe was experiencing was a drug induced ataxia.  Since we had upped it on Tuesday, it was a side effect that she was experiencing.  They felt very confident and eased my mind greatly.  It should only take her body three or four days to adjust. So tomorrow or Saturday we should see an improvement.  Crossing our fingers and saying our prayers!

Days like today remind me that this is not going away.  We will always deal with things like this.  As a matter of fact, one day this walk may not go away.  It might be here to stay.  And if it's not this, it very likely is something else.  Living in a world with muscular dystrophy is not very fun most days to say the least!  

Mom is tired tonight.  Chloe is tired tonight.  Chloe is still hurting tonight.  She's just had a nice hot bath and is now wrapped up in a heating blanket.  But her walk has gotten better today.  Not 100% better but better than 9:30 when I took the video!   So, I am praying that when she awakes in the morning she will be as normal as Chloe gets.