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.*

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!

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!

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!

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.

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.  

numbers

Things have been going really well over the last week or so, everything considered.  At Madi's last appointment, all that was needed where blood numbers.  It seems that we are always interested in numbers.  Not a bad thing, but it is something that can't be seen.  It's also something that I can't check on my own.  A little 'grrr' moment for me.  Wouldn't it be nice if a CBC could be obtained much like a diabetic gets blood sugar results?  (This is where you, the reader, nod up and down vigorously in agreement with me. Thank you.)

Numbers for the day: (1/23)
WBC - 2.4
Hgb - 10.9
Plts - 235
ANC - 96

So.  With numbers like that, we are still staying in and away from crowds.  School and church are the big ones.  Although, while on the steroids, she really hasn't had the energy to do much.  We are also waiting to see what her numbers will be this week.  If her ANC hasn't come up to either 500 or 750 (I'm not sure which it needs to be) Madi won't be able to have her treatments this week.

{A little aside here.  While not having treatment this week would mean a break for Madeline, it would just put her off schedule and make the overall treatment phase last longer.  Something we don't want.  Either result we get will be both good and bad.}

As I sit here typing, I'm waiting for a phone call from the home nurse to let me know what time they will be at the house to get a blood sample.  We thought this would be better/easier.  So far, it's been a bit frustrating.  The call I put in to the Pratt Center let me know that the nurse was supposed to be her this morning.  It' now after 2 and we haven't heard anything.  (Yes.  This is a 'grrr' moment.)  Hoping we will get someone here with enough time to get CBC results today, or still have enough time to go into the Pratt Center and let them do it for us.  - End of rant.-

Good things that have happened since the last post?  Glad you asked.

January 18th Madi turned 6.  We had a quiet little celebration at home with pizza and a Culver's ice cream cake.  YUM!  After she ate, she promptly went and laid down on the couch to quickly fall asleep.

Monday January 21st was a day off from school.  The kids had a lot of fun playing with each other and Madi started to get some energy back.

Tuesday January 22nd we were able to have Madi's homebound teacher, Mrs. Rogers, come out and spend a couple hours working on school.

We also threw caution to the wind that day and headed down to Chesterfield Valley to attend Chick-fil-a's Family Night.  It was American Girl Doll themed and the kids had a blast.  We were even able to take a couple of friends with us.  Madi stayed close to me most of the night and even ended up on my lap for part of the time.  She was happy but exhausted by the time we got home.  7 Kids, 6 kid's meals, 6 dolls and finally 7 balloons in the van on the way home.  Memories!

Little brother along for the ride.

23rd was her blood test.

January 26th, just before going to bed, Madi lost her first tooth.  Lots of excitement over this: we did not want to get that little booger pulled.  She was pretty pleased with herself.  I have a feeling the second tooth will follow shortly, since she now knows it won't hurt to pull it out.

That has you all caught up to where we are now.  IF Madi's numbers are good, she has an LP and chemo appointment Wednesday at 10:30 after getting accessed at the Pratt Center at 8:45am.  Chemo will then be administered Thursday, Friday and Saturday.  It's promises to be a long week, but we would like to just get it over with.  If her numbers aren't where they need to be, we will be waiting until they do get at a good level.  This would be our first delay.  Not what we want, but we are very grateful she hasn't had any prior to this.  Truly a blessing!

Please be praying for her.  Specifically that her numbers reach good levels to continue treatment.  Thank you to everyone who has been following along on our journey.  It is much easier road with you all tagging along for the ride.

***Update***

The nurse just left with the little vial filled with Madi's blood.  She is headed to the hospital now to get it to the lab.  We should have results sometime later tonight.  Fingers crossed!

Also,  Madi felt warm while sitting on my lap.  Temperature is at 99.8*.  Please be praying that it doesn't go higher and goes away.  It doesn't become a real concern until it gets to 100.5* or higher and doesn't come down on its own.  We can't even give her tylenol to help because it would potentially mask a bigger problem.

Pray, Pray, Pray!!

working hard

We've had a busy week, but I don't really feel as if we have gotten much done around here.  There's been a lot of running around town and several errands completed.  Doctor's appointment on Tuesday and LP on Thursday.  Flu shots on Thursday afternoon - don't even get me started on that one.  Today was a good day to just relax, get a few things done around the house and enjoy a pretty easy day.  When the older girls got home from school, it was time to head outside with some friends and work those big muscles.

Madi's strength has become next to nothing due to the medications and all her body has gone through.  She has a lot of trouble getting up off the floor and struggles going up the stairs.  (If she goes up stairs by herself, she has to crawl.)  We are so incredibly proud of her determination to keep her independence, though.  She is not content to just sit back and let us do everything for her.  She only calls for help if she absolutely has no other choice.  We love the fact that she is a fighter - in big and small ways!  She is setting such a good example for so many.

milestones

Madi has hit a few milestones at this point -port implant, lumbar punctures, bone marrow samples, coming home from hospital, the end of steroids - but, Thursday marked the end of her first 28 days.  To mark this grand day in Madi's life, she got to get a lumbar puncture and bone marrow sampling.  Good times, huh?!

Here she is all hooked up to IV fluids and Vincrystine.  I believe there was a movie playing and that blanket was in the warmer before they brought it to her.  We get to the hospital test and treatment area an hour before the scheduled procedure.  Plenty of time to get her prepped and ready for Dr. Rob.  Since she didn't sleep well the night before, she fell asleep and stayed asleep as she was wheeled away.

Madi can't eat the morning of these procedures.  Makes her a bit grumpy.  So, we packed a couple of pieces of banana cake to make things all better afterward and have a more comfortable ride home. (I really need to do something different for a travel pillow.)

We will head in to the doctor's  office on Tuesday afternoon to get all the result and find out what the next step will be in Madi's treatment.  We did get good results Thursday on her CBC : Hemoglobin 11.5, platelets 90K and ANC 1260.

Many people ask us how things are going.  I thought I would take the time to let everyone know how our days usually go.  This isn't an 'oh, woe is me' thing, just a realistic picture of where we are right now.

The first part of our morning is consumed with getting the older 2 ready for school and out to the bus by 8:30.  I fill my day with the normal taking care of kids and house that any other mother would do.  In addition to that, is taking care of Madi.  It's a lot like having a 43 lbs new born right now.  She lets me know when she is hungry and I get her food - sometimes several plates of food.  She lets me know when she needs to go to the bathroom and I help her get there - most times I carry her, sometimes she walks.  She lets me know when her stomach hurts and what she needs me to do to help her manage the pain (time on my lap, tummy rub or foot rub).  I help her get back and forth to the bathroom several times at night, as well.  I'm grateful Kevin was thinking ahead when we got home from the hospital and put an extra bed in Madi's room for me.  It makes it much easier for me to take care of her and not disturb Kevin's sleep during the work week.

Life isn't bad at this point.  We could be dealing with so much worse.  Our biggest frustration right now is having to watch Madi go through everything.  She is such a strong little girl, though, and is handling this phenomenally.  Now that she is off steroids we are starting to see more and more of her personality come back as each day passes.  Such a blessing!

Since I have to be available for Madi and can't just head out the door to play with the little ones,  I've been so thankful for the deck Kevin put on the back of our home.  Bike riding and outdoor play is much easier with this space available to us.  I've even lightened up a bit on some of the indoor play.

Next will be a basketball goal somewhere in the kitchen.  :)

did you know we have other kids?!

Silly question perhaps. But, with our focus on Madeline at this time, it can be hard to give the others the attention they need.  This is something we are working to balance in the family.  It really helps that our other kids are very concerned about Madi's welfare and don't seem to be upset with the situation - too often.  :)

Anyway.  We thought we would share Liv's 4th birthday with you.  While birthdays are typically low key around here, this was especially.  We decided to take her over to the American Girl Doll store and let her spend her birthday money on the doll of her choice - Julie.  We then came home with a cake and celebrated before bedtime.  Since today is Wednesday and things tend to be crazy getting out the door in time for church services, celebrating a day early made sense.

Happy Birthday, Liv!  We love you very much!

~~~~~

In other news.  Several people have asked us about our financial situation.  We are very blessed to have great insurance through Kevin's employer.  Medical bills are starting to come in, but there is an out of pocket cap on both medical and prescriptions.  I set up a page titled 'donations' so everyone could see some other areas that might be worthy of your donations.  The first two are families that we know personally who are struggling.  The rest are organizations we have been on the receiving end of.  Funny how you never realized how important it is for the blood bank to have blood and platelets until your child is in need of them.  Did you know platelets are only good for 5 days?  Kevin is going to be giving on a much more regular basis now.  :)

Also, please say a prayer for Madi.  Right now one of the side effects of her medicine is severe constipation.  Many tears have been shed this morning because of the pain she is in.