3 Little Birds, Pitch By My Doorstep

As we all know, there can be a lot of wasted time to be found on the internet - and Facebook in particular.  I figure that sums up most of my time on there except for when I'm actually working.

The other day, though, I don't care how much time equaled waste, because I ran across this picture someone had posted in a FB group I'm a part of.

I immediately knew I had to have them.  I even texted my husband the picture and let him know I was on a mission.  {I thought it only fair to warn him of my obsession intentions before he got home.}

You may be thinking 'Why?'.

Or, maybe you're more like - 'Really?!?! You can't be serious, right?!'

So, let me take you on the long, winding journey of my - slightly strange - reasoning, my friends.

If you recognize the title of this post for the song lyrics that they are, you probably already know where this is going.  IF you don't know the song, here's a link.



Bob Marley - Three Little Birds

I have always enjoyed listening to this song and have passed that love on to four of my five children.  I've had it on my iTunes playlist for years.  Whether we're in the house cleaning, by the pool, or driving down the road with the windows open or closed:  this song gets turned up just a little louder.  {Which is pretty humorous considering we are all painfully white.}

However, about three years ago, this song took on a new meaning for me.

You see, when you have the reality below staring you in the face....

So many things in life take on a new meaning.

And you need something to fight off the worry and nasty thoughts that can plague you - especially as a parent watching your child suffer.

I know we've all seen pictures of children dealing with any number of ailments.  And our hearts go out to them.  And their families.  We sit there and can't imagine what they are all going through.  We even say an extra prayer or two just for them.

But when it's your child in that picture...

When it's your child's long, beautiful, blonde hair now collected in a bag...

Or when you are the one sitting on the floor of the grocery store with your child while she has a meltdown for no apparent reason...

You hit your knees on a daily basis.  Sometimes you don't leave your knees for days.  People may see you walking around, going through the motions of life like normal; but,  inside you are humbled in front of the throne of God begging for your child's life.

There are so many things we were able to find strength in during those months and years, though.  We have some of the most amazing friends both near and far.  We were (and are) able to open the scripture and find so many encouraging words to sustain us.  My prayer life was built up significantly during that time, too.  And our marriage gained a firmer foundation.

With this song, though, we could get lost in it.  We would dance and sway together in the living room and smile through the tears.  We could really enjoy the moment and forget for just a little bit.

Can you now understand just a little bit of my obsession/desire to have those birds in my home?  And when I saw these three little birds, I was on a mission.

And I found them just a few hours later at Target.  {Yep, that same day.}

While I thought about putting them in our kitchen; they look perfect over our front door.

It's something we will be able to see every morning when we come down the steps to the main level.  The kids will also get to see them everyday heading out the door for the school bus.  None of us will ever be tall enough to slap the top of the door like all those football teams coming out of a tunnel; but, this is kind of the equivalent for our family in my mind.  It will be a reminder to us all that God takes remarkable care of us through all the good and bad times in life.

I hope I've explained that well for all of you.  I'll be completely honest: this post has taken me several days and  a couple of all out sob-fests to get written.  Because even with all the emotions I've gone through and how thankful I am to be where we are today; I still ache for all those families who don't have a happy ending to their story.  I hope that now when you see those pictures of someone else's kid you will understand just a little more and are willing to say a few (more) prayers for that family.  And then maybe this song will cross your mind, give you a smile and remind you that every little thing really will be alright no matter what may come.

The LORD is my strength and my shield; in him my heart trusts, and I am helped...   Psalms 28:7

Love to you all and God bless.

Another Milestone for Madi

Today marks another milestone for little Miss Madi!

Chemo ended about 5 months ago.  Now that cold and flu season are winding down, we are hoping to finish her IVIG treatments this month.

This is pretty major!

Why?

Because if her immune system is working well enough on its own, and she no longer needs to receive IVIG......   she no longer has a need for her port!!

That's right!  No more port means no more restrictions and fewer worries.  Our little girl can really be a normal kid.  (Well, as normal as the rest of the family, anyway.)

She's already had blood drawn from her arm a couple of times to make sure she can do that.  (The girl has some great veins!)  So, no worries there!

So, either in May or June we will have some extra blood work done to see how her little body is doing on its own.  From there, we will be able to schedule her appointment to remove the port and get on with life.

Timing is perfect with summer just around the corner, too!

Say a few extra prayers for us as we see how the next couple of months go.  I'll be keeping you all posted!

A Little Update On Madi

Many of you know our daughter was able to end her chemotherapy treatment for leukemia in November of  2014.  A great time for all of us, but especially her.  She's been doing great since then and we are VERY grateful for her progress.

She's about four months out and sometimes it's amazing the difference in her.  If you asked her before treatment ended how she felt, she would always say 'good' or 'fine'.  And really, she did - compared to how she had felt for the previous months during heavy treatment.

Now you can ask her how she feels and you'll get 'REALLY good!' as a response.  It's a great and unexpected change!

She's able to keep up with her siblings a little bit better these days.  And she's always up for any activity.  The timing couldn't be more perfect now that the weather is warming up.

Madi is still being monitored closely by her group of doctors.  Something that definitely gives Dad and Mom some extra piece of mind.  Blood work is done every two weeks (for now).  She is also receiving her IVIG (immune therapy) to keep her compromised immune system strong during cold and flu season.  We also give her supplements that have been cleared by her doctors.  

So, once a month we head over to the treatment center for several hours of IVIG, art therapy, playtime and candy for the little ones.  I go fully prepared to do some work - although, I rarely get much done.

Other things that have been progressing for Madi?  At six months out from the end of treatment, Madi will have the option of getting her port out.  To say the least, she is looking forward to it.  It doesn't bother her, unless it gets bumped, but it does come with some restrictions that would be nice to not worry about any longer.  In order to get that port out, she has to be okay with getting blood drawn from her arm.  Once she found out what was required, she was ready to start practicing.  

This girl doesn't seem to be intimidated by much of anything!

Being a mom, I certainly have concerns as we move forward.  I liken it to being a first time parent and going straight to panic mode whenever anything happens.  You probably know what that's like, right?  "The baby has a fever!  Should I call the doctor?" or "I know head wounds bleed a lot, but is this too much?" or "Does that cough sound worse today?  Is that a wheezing sound when he's breathing?"

Only mine sound like this now.... "She just fell asleep in the middle of the day.  Is it because she had a sleepover a few days ago, or is she getting sick?" and "Hmmm.... is she looking pale or is that her normal coloring?" and "How long has that bruise been on her leg/arm/body?  What color is it?  Does it look like it's healing?" and my favorite "Where did that rash come from!"  It's a new place for me to be when my usual MO is "Suck it up, sweetie!  It's just a {fill in the blank}.  You're going to be fine."  I'm learning to adjust!  

There's been some crazy energy swings lately, so the doctor humored me and ordered some extra blood work.  At this point, everything continues to look good.  Keep praying she continues to do well and can leave this part of her life in her past.  Thanks for all your concern and continued request about Madi and her health!

  

Celebrate!

Life had been bombarding us lately.  Nothing bad, just trying to keep up with it all.  It can be a bit much at times.  (Normal life for any parent, right?)

November 4th marked the 26 month of our daughter's chemotherapy treatments for leukemia.  You can read about the last treatment here.

I thought I would share a few pictures of the journey.  It's been amazing looking back and seeing all she has gone through.  It's easy to forget sometimes how much she has endured.

The beginning.... 2 weeks before diagnosis.

The start of realizing something was really wrong. 2 days before.

Initial blood draw.

Admitted to hospital.  2 units of blood and 1 unit of platelets needed.

Port implant.

Hair loss.

Struggles

And triumphs.

Giggles and grins,

And days that just weren't the best.

Lumbar Punctures,

 And medicines.

Art and Physical Therapy.

Fundraisers.

Breakdowns in grocery stores.

Hot flashes.

Long days.

Getting done what needs to be done.

Wishes made and realized.

And embracing all that has happened.

Since our daughter's chemotherapy came to an end the first week of November, we felt a need to celebrate.  And that's exactly what we did!  Lots of friends from the area where we live helped us congratulate Madi on all she has endured and accomplished.

The Grandparents were even able make the long drive to attend.

She has been through more in two years than most people go through in a lifetime.  She's a stronger and better person for it all.  I can't wait to see what she and our other kids do in their lives because of what they were exposed to during this phase.

As a mother, I'm learning a new type of worry.  Don't get me wrong, there's a lot of relief right now.  However, I'm also concerned every time she takes a nap in the middle of the day wondering if the treatments didn't work.

Tomorrow we go in for a final lumbar puncture and bone marrow biopsy.  Please, please, PLEASE - take a moment to say a prayer for our little one!  While I know we would be able to go through all of this again, it's NOT something we want to do.  I'm very selfish in wanting my kids to now be able to live normal lives and not lives consumed by appointments, medicines, worries or illness.

Thanks for all the kind words of encouragement up to this point.  You will never know how much even the smallest of acts has helped over time.

I'll let you all know the results of tomorrows tests as soon as we know!

At The End.... Finally

It's been exactly 26 months to the day since Madi started this long journey of needle pokes, blood draws, transfusions, chemo pushes and drips,  oral medications, doctor visits, and a lot of unknowns.  I originally likened this journey to a path through the woods.  You've seen the pictures, right?  Kinda like when Maurice and Philip are headed out to take his invention to the fair in Beauty and the Beast.  The horse looks between the two paths... one sunny and cheerful with birds chirping, the other dark and gloomy with ominous eyes glowing from the depths.

That's kind of the picture I had in my mind of how things would be.  Somedays we would be walking along the sunny path, other days (and more often than not) we would be walking along the dark, rocky, unknown path.

I look back at that naive perspective and have to laugh.  Hard.  And just shake my head at it all.

What's it really like?

It's more like unknowingly being line for a roller coaster.  And then, when it's time for you to get in your assigned cart, there's no way to back out or change your mind about getting on the ride.  Even worse, is that fact that the track for this roller coaster is completely hidden from view except for the enormous drop at the beginning, yet you know that isn't going to be the worst part of the ride.  You don't know what dips or turns there are ahead of you.  And there's no way to really even prepare for what's to come.

On the other side of that scenario, there is no equal to the views from the high points.  There is no comparison for how bright the sun can shine in those sunny places.  Nor is there a way to describe the new bonds you form with your fellow riders.  There are even a few places along this crazy ride you will find yourself actually enjoying where you are at that moment.

This is a moment we are enjoying because Madi had her final chemo drip today.  It's a really odd feeling to know she's done.  It was even hard for her to leave at the end of it all.  Even though we will now be going to the office more often for checks on her counts, she was in tears because she didn't want to leave.  Hard to imagine, but this has been our normal for 26 months.  I doubt she remembers much of her life before Leukemia.

There is a smile under that mask.

Decorated pole for her last chemo treatment.

It's been an unreal experience for our whole family.  Would I choose to go through it again? ABSOLUTELY NOT.  However, I will say this has been a time of growth and maturing for our entire family.  We now have a unique perspective, just as any other family would have going through a traumatic time.  The blessings that have come from a bad situation have been humbling and a source of strength and new faith for us, too.

We definitely have some worries, so please continue the prayers.  We have no guarantee of the future, but the prognosis is excellent. Madi will be monitored closely for then next several months, which will help to ease our minds.  She will also continue her immune therapy to hopefully keep her free of infections during cold and flu season.  (It will take about 6 months or more for her immune system to be able to fully function on it's own.)

The ride is long and unpredictable.  Yet, you find yourself at the end before you know it.  We now get to exit this roller coaster and move on to the next.  (To be honest, I'm really hoping this new one is more the speed of the 'It's a Small World' ride at Disney.)

Regardless of what comes next, we can at least say this ride is done and we are finally at the end.

**Also posted at madismilestone.blogspot.com**

Madi Made A Wish

A little over two years ago, our third child was diagnosed with ALL (acute lymphoblastic leukemia).  It's been quite the journey.  If you would like to read more about this, feel free to visit Madi's Milestones.

As we near the end of this chapter in Madi's life, it seemed really appropriate to have Make-A-Wish contact us to find out what Madi's wish would be.  Is it any surprise a 7 year old girl wanted to make a trip to Disney World?!

This trip was definitely magical for our whole family.  That's right - the whole family, all 7 of us, got to go to Florida for a week.  Amazing!  Everything was taken care of for us.

We got a limo ride to and from the airport.  A first for all of us.

We then maneuvered through the St. Louis airport.  Kevin in the front, since he is very familiar with traveling in and out of this airport, and me in the back corralling little ones.  Not sure how many times on this trip I said 'eyes in front' to keep the kids from running into people.

Anxiously waiting for our plane to arrive.

Three of the five kids had flown in the past, but that was six or more years ago.  They will definitely remember this trip!

When we arrived in Orlando, there was a vehicle waiting for us to use the whole week we were staying.  So generous!

From the airport, we made our way to the village at Give Kids The World.  This place was amazing!  Here we are in front of our villa.  Our family of 7 was very comfortable in the space.

During our stay, we were able to visit Disney World and Universal Studios.  Both parks were a lot of fun for our family!  Disney's Magic Kingdom was definitely a favorite for our family, though.

While Magic Kingdom was a favorite, Universal Studios and Islands of Adventure had the bigger rides to appeal to the older kids' adventurous side.

Lots of fun was had in both places, though.  Madi had special passes at all the parks that essentially worked like unlimited Fast Passes.  Very little waiting at either park with the passes and the smaller amount of visitors for the time of year.  (I can't imagine going during the summer months!)  We made sure to enjoy the perks.  If we go back, it won't ever be the same.  They definitely spoiled us!

There were a couple of hot days during our trip.  Lots of ice cream was consumed that week.

We even had a few meltdowns and 'moments'.

And we were all completely worn out by the end of each day.

Life got back to normal very quickly.  School the next day, church that evening, and treatment for Madi on Thursday.  Here's Mr. Tom playing a game with Madi during her appointment.  He spends time with any of the kids and helps keep them on track with their school work.  He and Madi worked on math before getting out the game.

Our weekend was full, too, with pre-teen Bible study Friday night, Tough Mudder on Saturday (for Kevin) and then church on Sunday.  I'm really not sure how all you that have kids in sports do it all!  I still don't feel fully recovered or caught up.

The memories from our trip are amazing!  Such perfect timing for our family, too.  Madi will soon be done with her treatments for leukemia and this was a great way to start the celebration.  She and the rest of the kids deserved to have this magical time for all they have been through.

Thanks for all your prayers on our family's behalf.  Please keep them coming!  Madi may only have one treatment left, but she will forever have to be monitored in life to make sure this nasty illness never comes back.