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!!!

treatment day

Today we went in for Madi's monthly treatment.  She did great, as usual, but is sleeping the afternoon away.  She really doesn't have any ill effects from the Vincristine push she receives; however, the IVIG has a tendency to give her mild headaches and make her sleepy.  Not too bad in the whole scheme of things, though.

Thanks for all the prayers up to this point!  They are much appreciated.  Please continue to lift her up to our Father above.

fashion show

Recently, Friends of Kids With Cancer hosted a fundraiser and asked if Madi would like to be a part of it.  This was a great opportunity for us to give back just a little to a group that has given so much to us and other families.  Plus, it was a lot of fun!

 Some 'thank you' gifts for participating.

 Practice run.

 The lunch menu.  (Really good!)

 A short video of her walking.  As you can see, she kept her eyes on me the whole time.

 Formal wear.

 Lunch finale - dancing to "What does the Fox Say?".

 Sacked out in our room between shows.

 Behind the scenes waiting for her turn.

 A visit from Fred Bird.

Her favorite outfit of the day.

The day was full!  We had to be at the Ritz Carlton (yep, swanky) at 9am to start the day and didn't leave until about 9 that night.  There was a break from 2-5; but, she spent part of that in the hotel pool.  There were some separation anxieties to deal with before each show, but we were able to work out a compromise each time.  (The evening compromise meant I didn't get to eat supper.)  Kevin wasn't able to make it to the lunch show because of being out of town.  However, he did drive 5 hours to get there in time for the evening show.  She positively glowed when Kevin walked in our room just in time to change clothes and head right back out the door.

All the kids did such a great job.  There were 50 tables with 12 people per table... and.... both shows were sold out!  Amazing!

We're so glad Friends of Kids gave us this amazing opportunity to help them raise money to help some very special kids have a more 'normal' life while being treated for a horrible disease.  Madi is learning how to make a difference at a very young age!

it's been a while

I can't believe it's been a little over 2 months since I last caught everyone up to date on all things Madi.  I still hold to that old adage "no news, is good news"; so, things have been going really well lately.  This seemed like a good time to get some information out, though.

Our summer flew by and moved right into school fairly smoothly.  Madi started her First grade year on Aug. 13th and then missed the entire day on the 14th due to a scheduled LP, vincristine push, IVIG therapy and regular labs.  A long day for both of us, but I think it actually helped to have a day with Mommy to ease the transition into full time school.

There have been a few bumps along our little road, but we are working to overcome those.  Madi has a wonderful teacher this year who is working with us to keep things as 'normal' as possible.  Most kids at this point walk their little selves right up to the bus, find a seat to sit in, head to school and then head to their classroom as soon as the bus driver lets them off.  Our 'normal' could go that way.  Or, our 'normal' could go like this: walk down to the bus stop, see bus coming, panic, turn around and hold on to Mom for dear life while crying hysterically and refuse to get on the bus.  Mom decides it's not worth the fight and decides to take Madi to school.  We get to the drop off line at school and Madi refuses to get out of the vehicle, so Mom drives around to park and walk her in to the front office.  Park the car and have to physically remove Madi from the van (of course she is in the back seat), carry her screaming into the building, head down the hall to her classroom where her teacher kindly pries her from my body and holds her until I get out of the First grade hall.  Separation anxiety at its best.

That scenario is extreme, but it has happened a few times.  (Mostly in the first several weeks.)  There's no rhyme or reason to when this will happen, so I have a tendency to hold my breath until she puts her foot on that first step of the bus.

We've done several things to help make her feel more comfortable leaving me during the day: 1. She wears one of my rings on her bracelet while she is away; 2. She gets hugs and kisses before getting on the bus; and 3. If she gives me any trouble at the bus stop she has to come home and spend the evening in her room.  I know the last sounds a bit harsh, but it has made the biggest difference in our mornings.  It also allows her to make a choice instead of feeling completely out of control of the situation.

Another thing that has been a huge help is seeing a pediatric psychologist the group Friends of Kids with Cancer set us up with.  Dr. Lingg has been wonderful!  She not only works with Madi through play, but she takes time to talk with me about concerns and gives me pointers on how to navigate this time in Madi's journey.  She has even worked with our older two to help them better understand what Madi is dealing with, and also give them an outlet for their frustrations.  A win/win for our family.

So.  Enough with the problems - on to the fun stuff!

Madi is doing great.

Medically, she is now on a monthly schedule instead of a weekly schedule with going to the Pratt Center.  While we absolutely love all the medical staff there, this is another milestone in Madi's journey to celebrate.  Her numbers have also been excellent anytime labs are preformed.  Good labs free Mom and Dad up from worry of needed transfusions and extra trips in to the center.

Physically, Madi is pretty much back to her old self.  She still has to stretch the back of her legs, but they aren't nearly as tight as before the summer started.  Spending as much time as possible at the pool and playing outside with friends have been great physical therapy.  Plus, she really pushes herself to keep up with everyone else when playing with a group.  She is actually starting to gain weight and grow again.  It's nice to see her leg muscles filling out and having to put a few clothes away that are finally too small to wear.  Although, not much is put away for long, since little sis is wearing the same size in most things.

Other fun stuff....

We've been made aware of a much bigger world than we were a part of before Madi's diagnosis.  This has happened on so many levels, it's hard to articulate all areas.  One area is that of non-profits.  Kevin decided to partake in several 5K's this past spring.  He was able to raise about $1500, thanks to the generosity of our friends and family.  And our family was able to be part of the St. Baldrick's fundraiser this past spring.  Both of which were amazing experiences for us.  Our most recent fundraiser experience was Art from the Heart to benefit Friends of Kids with Cancer.  I'm not sure how many works of art were included in the silent auction, but it was so much fun for the whole family.  All the artists were kids who are currently undergoing treatment or are cancer survivors.  Madi even had a work of art in the auction.

Yes, we bid on it.  No, we did not get it.  Someone out bid us at the last minute.  Next year.

There were a couple of activities for the artists and siblings too.  Madi, being an artist, got to blow a glass ornament.

There was also wax hand making, provided by My Handyworks.

Gretchen with another sibling friend

Now, I don't expect everyone to suddenly run out and give huge sums of money to cancer research - even though that would be a great place to put your money.  However, I would urge everyone to find a group or organization to give to  - even if it is just your time.  As we have discovered over the past year, a little can mean so much!

a request

Tomorrow marks the end of Madi's first 12 weeks on maintenance.  Can you believe it?!  Things have been going really well as far as numbers and how she feels physically.  She's been so blessed to have such an 'easy' time during all the treatments.  We thank God daily for His continued care of her and the rest of our family.

So, my request? We are asking for prayers specifically for Wednesday.  This is when she gets to start her 12 week cycle all over again:  blood work, lumbar puncture, intrathecal chemo, vincristine push and an IVIG therapy drip.  It's a lot for her little body to go through.  She's handled these all well in the past, but we still ask for prayers on her behalf.

I'll have my computer with me that day and hope to update everyone in between games of War and Go Fish.

Thanks!

still going

Madi had a great time at Camp Rainbow.  It was an overnight camp for kids 6 to 13 living with cancer or other blood-related disorders.  I only got a couple of calls that week to let me know she was homesick.  The counselors also had a scare when Madi slept for 14 hours one night.  A quick CBC showed there was nothing to worry about.  She did last the whole week, though!  Huge accomplishment for a 6 year old who has never been away from home by herself.

Madi with Cara and Hannah, her counselors

The kids and I headed in to my parents' place for a few days after camp was finished.  We had a lot of fun catching up with my parents and some of the people I grew up with.  There was also a LOT of swimming.  Our 3 yr old son decided to take his little floaties off and learn how to swim.  I now have 5 kids who can keep their noses above the water all by themselves.  Makes time at the pool a little less stressful.

The day after we returned, Madi had to go in for treatment (vincristine and methotrexate) and a CBC.  She also started steroids for 5 days.  Steriod week is never an easy one, but we seem to be learning some tricks to make the time a little more bearable.   Naps seem to be the best help, but what kid wants to take a nap?!

July is going to be another busy month for us.  Different kids have different activities they will be a part of.  Thankfully, nothing is scheduled that overlaps.  Before I know it, I'll be purchasing school supplies and getting ready to meet our teachers for the year.  Time seems to be going by much too quickly for the fun stuff and not fast enough for the not so fun stuff.  Still, life is good!

good news

You know that old saying, 'No news is good news'?  That pretty much sums up what's been going on around here.  There's been a lot going on in our lives, but nothing bad -  a blessing, for sure!

Some of the highlights since I last posted:

St. Baldrick's Fundraiser- April 1-5

Read more here and here.  The school really rallied behind the family who set this in motion and was wonderful to include our family in it all.  We've been blessed to be living in this community at this time in our lives.

Maintenance Starts - April 24th

This is a HUGE milestone for Madi on her journey.  Maintenance is the last phase (Phase III) in her treatment and will last for 2 years from the start of Phase II.  So...... That takes us to, roughly, November of 2014. *sigh* 

Last Day of School - May 23

I think all of us were ready for this day. :)  There were a lot of projects the last quarter of school and Gretchen was really stressed.  She made it through, though.  Kevin was wonderful and took all the kids to his parents place for Memorial Day weekend.  Jim and Sandy then kept all 5 kids for the rest of the following week.  I had 7 days to get stuff done without having to worry about the kids.  Great time for appointments and a vicious head cold.  I was able to get a few things done, watch a couple of movies without interruption, go to the bathroom without an audience, read a little, have a much needed emotional catharsis, and spend some time with Kevin.  Over all, just a much needed week emotionally, mentally and physically.  Kevin and I were even able to go to Chicago one night and watch the CrossFit Regional Competition.  AMAZING!  It was nice to meet several of the people Kevin works out with, too.  

Haircut - June 3

Our oldest has a huge amount of hair on that little head of hers.  She's been asking me for a few weeks to get it cut.  I was dragging my feet getting it done incase she changed her mind.  (Plus, she has beautiful hair.)  Since Gretchen was determined to get it done, I told her about Locks of Love.  She was even more excited to get a cut, then!

First cut....

During....

After....

She loves it!  It's much easier for her to take care of and much cooler for the summer.  A win-win for sure.  (As you can see, Madi is getting a full head of hair just in time for summer!)

We've been going non-stop since school got out.  This week we had VBS in the mornings and various appointments, play dates, or time spent at the pool in the afternoons.  Yesterday afternoon Madi had labs and IVIG.  We then met up with Kevin for supper and then a devotional/singing at Gambril Gardens.  Today we will be catching up on our neglected house and getting Madi ready for Camp Rainbow.

Please continue to keep us all in your prayers.  Life is good, but there are starting to be more emotional issues for everyone as reality (and steroids) have settled in.  We are taking steps to deal with it, but prayers are coveted.  A big 'thank you' to everyone who has given us gift cards, helped with kids, sent Madi things in the mail and kept us in your prayers.  All the little things that mean so much to us!  Love to you all!

busy

We've been really busy around here!  I just realized it's been a month since I updated the blog.  In that time Madi has had 3 chemo treatment days and 1 LP during one of those days.  She's up running around and having fun.  A few of our friends have recently commented that Madi seems more like the 'old Madi'.  She can still be hypersensitive in different situations, but that is mild compared to multiple hospital stays and delays in treatment.

Things have been going so well, we decided to take a short family vacation during part of the kids' spring break.  Madi had chemo on March 13th and we headed out on the 14th.  Our first time to Branson was a lot of fun for us and the kids.  The weather even got warm (hot) enough that the kids wore shorts and flip flops one day.  We even splurged on ice cream to help everyone cool off.

Time was spent in the hot tub on the deck regardless of the temperatures or weather.

I had multiple trips up these stairs.  Once the 2 littlest ones got up they had trouble getting down.

After we returned to St. Louis, we did some spring shopping.  Sawyer is learning at an early age what it means to shop with a bunch of females.  He did great!

The kids got an extra day of spring break thanks to the snow storm that hit the area on the 24th.

I thought things might slow down once the kids returned to school, but we've been running ever since.  Spring brings a lot of sunshine and flowers, but it also brings a lot of activity and extra commitments.  I have a couple of fundraisers that I'll share with you soon.  Also, Kevin's first 5K is tomorrow morning.  We definitely want to say a BIG 'Thank You' to all who have contributed.  The donations are almost double what Kevin's goal was!

Madi has physical therapy on the 9th and her next chemo treatment will be on the 12th - as long as her numbers are good.  She will also be receiving her next IVIG therapy the 12th.  Keep her in your prayers!

perfect attendance and a delay

Last week, Madi had zero appointments.  Even better?  She was strong enough to attend school every day that week.  This is her first full week of school since August!!  Out of curiosity, I looked at her attendance record online - she has missed 266 days this year.  Not the kindergarden year we had planned, but better than it could have been.

We're learning to take the bad with any good that comes our way on this journey.  Unfortunately, Madi has a delay in treatments right now.  She went in Saturday morning to get her chemo.  All of her treatments are count dependent because of the level of methotrexate she will receive.  Platelets have to be 50k and she was at 44k.  We'll be heading back in on Wednesday of this week to see if her numbers have gone up.  If not, she will receive the vincristine she needs and we will schedule another date to receive the methotrexate.  Dr. Rob has assured us that this is 'normal'.  Just a little bump in the long road she is on.

Madi has started back on physical therapy sessions.  It's amazing how much this helps her fight the side effects the medicines have on her body.  While she might not get sick, her balance is a little off, her muscles are weakened and the ligaments in her legs tighten up.  All things that can be fixed.  (We've become very grateful for modern medicine and heath insurance over the past several months.)  She enjoys the challenge PT gives her and she loves her therapist.  Win-Win.

Keep praying!  If those numbers can get up where they need to be, we can keep treatments going.

just a little longer

Madi started the final leg of her current phase on Wednesday 27th.  I'm constantly amazed at how well she handles things and how smoothly everything can go.  We arrived at the Pratt Center to get her accessed at about 9:30am and to have a CBC run.  (The next several treatments are count dependent.  That means her hemoglobin and platelets have to be at a level that is acceptable.)   Our next stop was Mercy's Children's Hospital for another LP.

I'll just stop here and say how crazy this past week was!  Trying to get everything timed just right so we wouldn't miss appointments and school activities was a bit stressful, but we managed.  Since Caroline had an oral presentation at this day, I decided to take Liv and Sawyer with me to Madi's appointment.  They had their squirrel-y moments, but for a 4 and almost 3 yr old, they did REALLY well.  Between the playroom and snacks during a show, things worked out.

The staff at the hospital was ahead of schedule and Madi went back a little before her scheduled time.  It only takes about 15 minutes for them to do what they need to in the procedure room and then bring her back to me.  Just about every time she has an LP, she receives intrathecal chemo - chemo in the spinal area.  We then had to hang around to receive her other two doses of chemo that were scheduled for that day: Vincrystine and Methotrexate.

She's always hungry after waking up since she has to fast before going under.  I try to have a good variety of food for her to choose from, but Cheez-its are her favorite.  

Amazingly enough, we were able to get out of the hospital with time to spare!  I had warned Caroline that there was a hugh potential I wouldn't make it to school in time to see her.  I wish I could share the mental picture of her face when she saw us walk in the door for you all to see.  No matter how understanding she would have been of me missing her Famous American report, it was nice that I didn't have to disappoint her.  The kids and I got to be there and hear her 15 second spiel about Helen Keller. Madi then stayed the rest of the day at school.  Amazing!

The doctors have already warned us to not be surprised if we have some delays the next couple of months.  She is scheduled to have treatments every 10 days.  Each treatment will be count dependent.  Methotrexate dose will increase each time by 50 mg, if her body can handle it.  Just as it has been in the past, she will receive blood or platelets as needed.  We are obviously praying she handles this as well or better than she's handled everything up to this point.  Please keep praying with us!

Kevin has been keeping up with his workouts and running.  I believe he is ready for the upcoming 5Ks he will be participating in.  A huge 'thank you' to all of you who have donated already.  He is still collecting money for the Leukemia & Lymphoma Society.  There's still a link at the top of this blog.  Any amount is appreciated - don't feel like you have to donate a large amount for it to make a difference.  Every little bit helps!  Can you just imagine if everyone just donated $1!  (There are boxes that can be checked or unchecked to hide or reveal donor name and amount, if you want.)  Kevin can also turn in personal checks or cash.

Madi has her next treatment this Saturday.  I'll let you know how things are going afterward.

doing good

Today was just a 'quick' number check for Madi.  When we are able to go in on Tuesdays or Fridays, Madi usually gets to spend a little time with Tasha, the Art Therapist.  She loves this arts and craft time - she's a lot like her momma that way.  Here is todays creation.

Next week, I'll take her back to the Pratt Center for some PT.  She's doing pretty good right now, but she's still week.  On Wednesday, she goes in for an LP and chemo treatment.  Her treatment is number dependent, so pray that her numbers stay good and she has no delays.

Numbers for today:
WBC - 4.2
Hgb - 12.0
Plts - 420
ANC - 1974

Remember that the kids are collecting change until this Friday (Feburary 22).  Feel free to contribute to this.  Also, Kevin is still collecting donations for his 5K with the Leukemia & Lymphoma Society.  This can be done on line or talk to him about other types of donations (check/cash).  A big 'Thank You' to those of you who have already helped us out with these!

fundraiser

We have a couple of things we as a family are involved in that we would like to share with all our friends and family.  This seemed like the best avenue to reach everyone.

First, the kids' elementary is currently doing 'Pennies For Patients' - a youth program for the Leukemia & Lymphoma Society.  Most of the students are aware of Madi's illness at the school and this was an idea one of the students had to get the school involved.

Basically, all the kids in the school were given a box like the one above in which to collect spare change.  Donations can also be made in check form and given to us or credit card at www.schoolandyouth.org/gat.  If anyone would like to help the kids with this endeavor, just get any money to us so it can be turned into the school by February 22nd.

Second, Kevin has signed up for a 5K fundraiser for Leukemia & Lymphoma Society.  Actually, he is running in 3 5K races.  The first race will be on April 6th at Forest Park.  He needs to raise $750 to participate;  but, we would, of course, love to raise even more than that.  Wanna donate?  Kevin has a blog set up and it's ready for donations.  http://pages.teamintraining.org/gat/tsttnt5k13/kwisew  Or click on the widget on the right side of this blog.  I've been roped into keeping up with his new blog and maybe even making it a little more visually appealing.  At least Kevin didn't ask me to run with him.  (For those of you who really know me, you know the relief I feel!)  I will try to keep everyone up to date on how this is going - as well as everything else. 

Please share this information with others!  Every little bit helps in this fight against blood cancers.  Our life and Madi's could have been so much different if it weren't for research done by this group.  The money we raise will not only help Madi but so many more fighting cancer right now and in the future.

If you have any questions, feel free to contact us at madismilestones(at)gmail(dot)com.  

i knew i shouldn't have said it

Last Friday saw us at the Pratt Center for a final dose of AraC.  Such a relief for us to finish up the week strong.  She was tired that day, but she was able to attend school Monday thru Thursday that week.  Madi really doesn't let the leukemia hold her back much at all!

While we were waiting for CBC results that day, I was talking with one of the other parents.  We have met so many nice people/families that are going through the same struggles we are.  While 'comparing notes' the this mother was telling me about the hospital trips, headaches, delays and other trouble her daughter was having with her treatments.  She then asked how Madi was doing.  I always cringe when this question comes up.  (We have been so very blessed with the way Madi's body has handled everything so far, so I always feel like, at some point, something bad is just waiting to happen.)  I told her that Madi's treatment was going as planned and we haven't had any hospital runs, sickness or delays- definitely answered prayers.  As soon as the information left my mouth, I thought 'now something will happen'.

Fast forward to Sunday.  Sawyer woke up with a croupy (is that a word?) cough and some labored breathing.

Monday morning, his cough was worse, he had a fever, and he was really struggling to breathe.  A trip to the pediatricians was in order after the older 3 got on the bus.  Sawyer tested negative for RSV and was put on Zpac to help clear him up.  Lots of prayers on my part that this didn't travel to anyone else.  Monday night Liv was feeling tired and cuddled up on my lap.  Yep, she had a nice little 102° fever going on.  *sigh*

Tuesday morning both Sawyer and Liv were fever free and seemed fine.  (Well, S still had his cough, but he wasn't struggling to breathe.)  We had to head in to the Pratt Center for a CBC and a weekly checkup.  Quick in and out, right?  Ha!  Madi was in need of platelets.  No biggie, really.  It just adds about 2 hours to our time, so we got the platelets ordered and picked out a couple of games.

A little later the nurse came back to let us know that her hemoglobin was down to 8.5, meaning she would need blood soon, but we could put it off a couple of days.  Also, Madi was due for her second round of IVIG.  Blood takes about 2 hours.  IVIG takes about 3 to 4 hours.  Total of 6 hours since they have to do one at a time incase of a reaction.  I decided to push these off until Friday when I knew Kevin would be off work and I could go solo with Madi.

We always try to keep an eye on Madeline's temperature.  It's one of our first indicators that something is going on in her body that isn't right.  We left the Cancer Center with a last temperature check of 99°.  As she sat staring at her plate at supper time Tuesday night, I realized I should probably check and see where she was.  Quick trip to Walgreens to get a new thermometer for Madi, since I used the other on Sawyer and Liv, and we discover she is at 101.8°.  Wait a few minutes for a second check and she is at 102°.  Time to call the doctor.

Okay,  I'm getting tired of typing.....Long story short time.

We headed to the ER to get a blood culture and spend the night in the hospital.  They started her on antibiotics and were also able to get the unit of blood in her system that night while she slept.  The next day she got a chest xray and another CBC.  Kevin and I switched out that night so I could get some sleep.  (Madi has a tendency to go to the bathroom a lot when hooked up to IV fluids - day and night.)  Thursday, we were given the green light to go home right after lunch.

Did you know she didn't have a fever the whole time she was at the hospital?  A little frustrating, but I wouldn't change what we did.  All of it was for the best for Madi, and that's all that matters.

We are keeping a close watch on her now.  Today she was able to go in for her scheduled IVIG therapy and that should help her immune system a lot.  Next week we will go in for a weekly CBC and I'm pretty sure she will need platelets again.  I'm just very thankful that these needs can be met whenever they come up.  Plus, even though she had to spend some time in the hospital, she is still on track for treatments in two weeks to start up again.

She continues to be in good spirits as the day goes on.  Hopefully, she will be able to have a full week of school next week.

Keep up the prayers - we appreciate them so much!!

and repeat

This week has been pretty much a repeat of last week - minus the LP and fluid backpack.

She continues to handle the chemo with little to no side effects.  This is a huge thing for her since it allows her to have a more 'normal' life.  She's been to school every day this week except friday with a smile on her face.

We went in on Wednesday to get her chemo push and unit of blood as planned.  She takes all this in stride - it's amazing!  As soon as she was hooked up to the pump, she settled in with an apple and a movie to wait out the 3 hour timeframe.

She soon tired of just sitting and watching, so we went and go at game out of the cabinet.  It was a lot of fun watching her little mind work and get better at strategy.  She's a quick little girl!  Since Lisa had the two little ones, I was able to give Madi my undivided attention.  It's always fun to spend this time with her and forget , somewhat, the real reason we are sitting in this room.

Thursday was a quick chemo push, CBC and then on to school.  I'm so glad she likes school and will now go to her class willingly.

Numbers for the day:

WBC -  1.6

Hgb- 10.0  (up from 7.5 before transfusion)

Plts -173

ANC-1100

Friday was her last treatment for the week.  *sigh*  She was tired from the long week, and that translated into being emotional.  I was glad a friend wanted a play date and had Olivia and Sawyer at her house.  (As if Lindsay doesn't have enough to do.)  Anyway, Madi was in tears because of the upcoming de-access.  Not that she was going to miss the needle and line, but she hates having sticky things removed from her skin.  The tape that is put over the needle and access site is roughly 4"x4" and very sticky.  It took some reassuring, but Ms. Heather, her nurse for the day, was able to work with Madi and remove the tape without a fight and with minimal pain.  There are a lot of special people who work in this office!

Madi decided she was too tired and not wanting to go to school this day.  I was all for keeping her home the rest of the day so she could rest and recover.  Perfect school attendance was gone a long time ago and there is no reason to push her to go.  Soon after we got home she fell asleep while sitting on my lap.  Always good for Mom to get some cuddle time in.

We've had some concern with her having a cold and cough this week.  Along with that, she has a low grade temperature that keeps fluctuating between 99* and 100.3*.  If it gets above 100.5* and stays there we'll have to get in touch with the doctors.

The next two weeks will be quiet with only blood tests to be done.  So glad that Madi's body will get a little break and some time to recover and prepare for the next round of chemo.