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

Madi's been doing well!  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!

  

Whatcha' Gonna Do?

I was all set to share about the party we had for Madi celebrating her end of chemotherapy.  I even had Wednesday set aside to type it all up and include her slideshow.

Then I spent all but about 2 hours away from home.  And those 2 hours weren't even back-to-back.

So.  Whatcha' gonna do when life happens?

Smile, shake your head, have a good laugh and realize it just may be one of those days you use a half tank of gas without going more than 22 miles from home at any given time.


*Madi slipped on some ice on her walk home from the bus stop Nov 18th.  She has a 'buckle fracture' in her left wrist.  She is doing well and has very little to no pain.  She'll have the cast on for 3 weeks and then a splint for another 3.*

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 mylifebyjessicawise.blogspot.com**

Treatment Day

This morning was a bit busy trying to get all my little ducks in a row.  I'm so grateful for all our friends who are able to help us on treatment days.  Getting the kids on the bus, the little two to a sitter for the 4 hr appointment and then getting back home can sometimes be a logistics nightmare.  Especially when the traffic looks like this.

Today there was an extra stop to make since Madi prefers to be accessed at the Pratt Center office instead of Test and Treatment at the hospital.  Not a problem - we want her to be as comfortable in any situation as we can make her.  I just have to remember to allow an extra 45 minutes to our commute even though the buildings are right next to each other.

The staff in Test and Treatment are amazing with the kids.  They try to have the same nurse take care of Madi each time we go in to make it easier on her.  The Child Life Specialist comes by as soon as we get in the room to see what craft, activity, toy or movie Madi wants.  Today she decided to do a craft.

 After getting checked in, hooked up to fluids for an hour, and getting a good dose of Zofran, the doctors take Madi back for her 15 minute procedure.  I have just enough time to grab a coffee before they bring her back to the room.

We head home after she has time to wake up and have a quick snack since she has to fast on these mornings.  She's just a bit tired the rest of the day, but she'll typically stay up playing or watching a little television until bedtime.  It's absolutely amazing how all the little ones adjust so well to the new normal of their lives.

Please keep mentioning her in your prayers.  She does such a good job that sometimes even we forget that she really isn't at 100% and won't be for several months yet.

a small step back

Things have been going along pretty smoothly for several months now. It only seems right that we should expect a few small setbacks here and there.  Nothing major going on, so we are grateful for that.  However, her energy levels have been inconsistent and her numbers are fluctuating.

Examples?
-Two weeks ago her white count was at 10,000.  Thursday it was at a whopping 1,000.

-Last Friday Madi slept until 11:30 am, got up for a potty break and drink, and then promptly fell asleep again until 4 pm.  All day her temperature fluctuated between 99.4* and 100.2*.  (Very thankful there was no need to head in to the hospital.)

-Thursday she was finally cleared for then new year to get her IVIG treatment.  I asked the nurse to please run her numbers for us, just to see how things were going.  Results show her ANC is at 480 - a far cry from the 1500 they like to see.

I am glad we know to keep her home from school and a little protected until her numbers rebound a bit.  There's a nasty stomach bug going around right now, and it would be best to avoid that.  I'll take her back in Monday afternoon to see if things have improved after having her off her 6-MP for a few days.

So, enough with the yuck. (Although, prayers are requested for Madi.)  We have been having some fun around here even during the nasty cold weather.  Kevin and I decided to enroll the kids in swim lessons.  Our kids already know how to swim well and are extremely confident in the water.  This is more to help them with technique.  Plus, it's great physical therapy for Madi and exercise for all of them!

Madi FINALLY lost her first top tooth.  It's been hanging on for months!  Long enough that her permanent teeth are already halfway in hiding behind those baby teeth.

This exciting event is almost a year to the date of her loosing her first tooth.  Oh the difference a year can make!

Another exciting event is the fact that Madi turns 7 today!  Such a blessing to be able to celebrate her life and watch her grow in so many ways.  She still has several more months of medication, treatment and monitoring, but her little body has started to gain weight and inches once again.  We couldn't be happier with the person our little girl is turning out to be.

So.  Even though there has been a step backward after so many months, we have plenty to be thankful for in our lives.  Hope each and everyone of you are able to see the good in your life even amidst the bad that happens!  Love to you all!

happy new year

Here's to a happy, healthy and productive New Year for us all!  Thanks for all the support over the past year.  There is no way we would be where we are today without all of you helping to hold us up during this time in our life.  We thank God for you all!!!