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.

again

Madi started her second week of four consecutive days of chemotherapy today.  It's amazing how well her little body holds up to everything that is thrown her way.  She was able to spend the whole day at school yesterday-  she was very tired, but still in good spirits by the time she got home.  We even took some time for a quick trip to the library right after I picked the kids up from school.

Today, Madi was accessed, CBC done, AraC push received and then a line left in like last week.  A pretty quick trip overall.  Just before we were able to get out the door and get Madi to school, her CBC results came back.  Her hemoglobin is down to 7.5, so she will be getting a bag of blood tomorrow as well as her chemo.  She still went to school today - she had some painting she couldn't miss out on.

Keep the prayers coming.  We really appreciate everyone helping us through all of this.  Your comments and prayers really help to keep us positive!

a full week

(from Jan 30th to Feb 2)

Our little girl is SO blessed and one of the biggest blessings in her life is all the people surrounding her with love.  Thank you all for all the prayers at the beginning of the week on her behalf!

After we got the number results on Tuesday morning, I got the ball rolling for the rest of the week.  My parents were already planning to come for a visit and it worked out great to have them watch the two littler ones during Madi's long week of chemo treatments.

Wednesday was the big day with an LP, intrathecal chemo (methotrexate), a second chemo push of AraC (Cytarabin), and an hour IV drip of Cytoxan.  A lot of medicine to go into that little body.  She handled everything really well, though.

I'll give you a run down of how the time goes on a day like this.  Typically, we head in to the Pratt Center to get her port accessed.  The nurses at Test and Treatment could do this, but we have had issues with blood return (being able to draw blood for testing) due to  the needles used there.  Plus, she is more comfortable having it done at the Cancer Center.  (A no brainer for a parent, if you ask me.)  Just before we leave, she has to be loaded up with extra stuff and snacks for after the procedure - which is promptly handed to Mom to carry.

We then head over to the Test and Treatment area at Mercy Children's hospital.  We haven't been there in a month, but everyone recognizes us when we walk in and make Madi feel very welcome.  They're a very caring group of people.  It was amazing the difference the nurses saw in her.  Everyone who stopped by the room to say 'hi' commented on how good she looked and how happy she was.  I was glad they finally got to see the 'real', very talkative Madi.

Skip-Bo Jr. helped us pass some of the time, plus it made her happy to beat me.

It takes about an hour from the time we arrive to the time she is taken back to the room for her LP.  During this time, blood is taken for CBC and CMP, urine sample taken and she is hooked up to an IV of fluids.  I get to walk back to the room and stay with her until she is asleep to help keep her calm and relaxed.  It then only takes about 20 minutes for the doctor to complete the LP and get her back to the room.

After the LP and intrathecal Methotrexate, vitals are taken and the AraC is given in the room.  The nurses try to give, or at least get started, on all the extra meds before she wakes up from the anesthesia.  This helps get us out a little quicker and eliminates  her becoming nervous about what might still need to be given.  After she wakes, she gets busy eating anything and everything she can get her hands on since she has to fast before procedures.

Then we just wait and until everything is done and we can leave.  She was gifted a new friend before she left the Cancer Center, so Minnie got to hang out with us all morning.

While Madi was back getting her LP and chemo, there was a box delivered to the room I was waiting in.  To make sure her kidneys weren't overwhelmed and continued to function well, she had to be hooked up to fluids until her appointment the next day.  The backpack holds the pump and fluids so she can stay mobile.  The box was full flushes, heparin block and anti-nausea medicine to be administered through the line left in her port.  How truly intimidating for a non-medically trained person!!  The home nurse was kind enough to give me a crash course and a phone number to call for help before she left us.






That day finished up with a trip to church services that night and Madi and I sleeping on the living room couches to make night time trips to the bathroom a little easier on both of us.

Numbers for the day:
WBC - 7.6
Hgb - 9.5
Plts - 516
ANC - 4330

Thursday, Friday and Saturday were pretty uneventful.  She had an appointment each day to get a chemo push of AraC.  She also started on 6-TG for a total of 14 days which will end on the 12th.  Daddy was able to take her in on Saturday after attending his CrossFit class.  It's always nice for the two of them to connect for a little bit and spend some time alone.  It also allows Madi to see her daddy as a caretaker instead of thinking only Mommy can do all of this.

Next week is pretty much the same with four consecutive days of treatment but no LP.  She has been doing such a good job.  We are hoping for at least a few days at school!

good to go

I was able to get the numbers this morning once the Pratt Center opened.  What a powerful thing prayer is!!  Not only did Madi's fever go away during the night, but we also got great results on her blood test. Her ANC, the pertinent number, went from 96 at last check to 2266! (They were just hoping she would get above 500!)  There will be no delays for her at this point.

Thank you for all the encouraging messages!  Keep praying, please.  We have four straight days of chemo for her to endure.

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!!

enter IVIG

We are still going strong with all of Madi's treatments and medicines.  We've been very fortunate/blessed to remain on schedule during cold and flu season.  All her numbers have remained at good levels with no need to get blood or platelets.

Madi ended her 7 day round of steroids (dexamethasone) on the 8th and then received treatment on the 9th.  I kept her home Wednesday night while everyone else went to church services.  My thinking - why drag her out in the cold if all she is going to do is sleep on the way there, have me carry her in, sleep all through class and worship on my lap, have me carry her out and then sleep all the way home?  (This scenario has happened multiple times.)  Also, do you remember me lamenting the fact that our little Madi goes silent during steroid treatment?  What a difference a day makes!  She was bouncing off the walls all evening, talking nonstop and couldn't settle in to go to sleep that night.  (Melatonin to the rescue!)  I was this (holding fingers up scant mm from each other) close to asking her to PLEASE be quiet for a little while.  Instead I just smiled and enjoyed the moment.

Treatment on the 9th went smooth.  She was pretty 'lazy' early in the day, but a lot of that is due to her not being able to get a deep sleep while taking steroids.  If you look closely, you will be able to notice a little puffiness in her face.  That went down quickly, but I'm sure it will be back this week.

Numbers for the day:
WBC - 9.7
Hgb - 12.6
Plts- 427
ANC - 6460

Today, Jan 16th, Madi and I got to go back in for another treatment.  She started steroids again this morning and has a total of 14 doses.  Her appetite has been back up, but she only wants certain foods.  We've tried to anticipate what she will want and keeping the pantry stocked.  She hasn't lost any more weight and hopefully she will gain a little bit back in the next couple of weeks.

So, the title of this post contains IVIG.  Ever heard of it?  I hadn't until the call from Dr. Rob on the 10th saying it would be good for Madi to have.  Basically, IVIG will boost Madi's antibody levels and help her fight infection since the chemo has depleted her own natural levels.  Not a big deal, but it did add about 3.5 hours to the day.  I know I've said it before, but I am SO grateful for our friends in the St. Louis area.  Lezlie was kind enough to keep the 2 littlest ones for me, as she has in the past.  It made her day a little more complicated, I know, but it was a huge help for me to be able to focus on Madi the whole time.  I was even able to sneak in some learning/school while we were at the Center.

We made it through a couple of educational games for kindergarteners, Brain Quest for 4-5yr olds and some of the Brain Quest for 1st Grade before she was ready to lay down and rest.

Since we arrived at the Cancer Center at 9:45am and didn't leave until 2:45pm, lunch was purchased at the little cafe on the first level.  Not bad.  Not super good.  Edible and filling.  It had probably been in the warmer for a little while.

Numbers for the day:

WBC - 1.1

Hgb - 10.9

Plts- 219

ANC - 180

Notice the big change?  Yep.  Those have definitely gone south.  It was advised that keep her in and away from large crowds at least through the weekend.  We can go in Saturday morning and get another CBC and see where she stands.  

Next week all she has is a CBC on Wednesday.  No more treatments or procedures until the 30th.  Hooray!!  If anything else happens between now and then, I will try to post and keep everyone up to date.

new year, new meds

Hope everyones Christmas and New Year holidays were as good as ours.  Madi had a break in treatments that allowed us to do our usual traveling to see and spend time with family.

Wilson side of family - all 25 of us!

We always have a great time and enjoy being able to visit will friends we don't get to see often when visiting the church family there, as well.

While Madi's schedule didn't include chemo we did have to go in for a blood check (CBC/CMP and lipase) on the 28th.  This was actually the first time the older two kids got to go with us.  

I think they had fun and Madi liked having the big kids to play with for a change.  Caroline walked around like she owned the place and Gretchen worked hard to avoid all visual contact with needles.  (G and needles don't mix... to say the least.)

By the end of appointment, something occurred to me - I think my younger kids may be getting a little too comfortable at the Pratt Center.

Numbers for the day:

WBC - 4.5

Hgb - 11.7

Plts - 293

ANC - 2385

Madi got to start 2013 off with a bang.  January 2nd got to see the beginning of new medicines and new procedures.  That morning she got to take her first of 14 doses of 4mg dexamethasone (DEX).  This is not one of our favorites.  We were in the pediatric cardiology department at Mercy by 8 am for an echocardiogram.  (One of the medicines, doxorubicin, has the potential to thin the lining of the heart and they needed to make sure all was well before administering it to her.)    She was then at the Pratt Center to get accessed and have a blood draw at 9:15.  We had just a little time to kill, so she got to play with Mr. Tom, the tutor provided by Friends of Kids with Cancer and I got to work on my Bible lesson for that evening.

It was then on to Test & Treatment at Mercy Children's hospital for an LP at 11:30 arrival at 10:30.  

I always get somewhat of a reality check on procedure days.  When all the machines are hooked up to her, crazy concoctions are being pumped into her little body and I sit waiting for her to wake up, it  brings home the fact that she really is sick and has a battle to fight.

A special thanks to Stewart and Johnna for coming out and watching the kids for me.  If it had been only the little ones with me, I might have tried taking them.  I just couldn't fathom having all five kids along for the ride, no matter how good they can all be.  7 hrs is a long time for any kid.  My friends swooped in and saved the day, and my sanity!

Numbers for the day:

WBC - 11.4

Hgb - 12.0

Plts - 269

ANC - 9810

About all that happened on Thursday was this:

Friday was a bit better and she even managed to go to school.  A huge surprise for both of us, I think.  She was exhausted by the time she got home, but she has yet to go to the school nurse during the day and ask to come home.  So proud of her!

Saturday saw us back at the Pratt Center for another chemo treatment.  This time it was Peg-asparaginase.  It was an hour long push, so we decided to get comfortable with our pillow, a warm blanket, goldfish and one of the iPads available to the kids at the center.

Numbers for the day:

WBC - 6.7

Hgb - 12.7

Plts - 341

ANC - 4420

Sunday found her back on the couch or in Daddy's recliner watching TV or napping.  She also had her first vomiting episode as a result of her treatment.  Nothing too violent, but another reality check for us all.  She then asked for chocolate milk and beef jerky for a snack soon after that.  (I'll wait.  Go on and have your own little 'episode' now that I shared that.)

Today, Monday, she is home laying around for the most part with little spurts of energy here and there. We will head back over to the Pratt Center Wednesday for yet another treatment.  (sigh)  I know Madi is getting tired of this, but she is being a trooper!  Thankfully, she takes her last of 14 doses of DEX on Tuesday night and then will get a 7 day break after Wednesday's treatment.

Back to the dexamethasone.  This little pill was part of Madi's first month of treatment.  (blah!) It's a different dosage this time, but still has the same results.  After just one dose, Madi was withdrawing and not talking, she had anxiety all morning, and overreacted to just about everything.  All of this has evened out a bit over the past few days, but she is still not our bubbly Madi.  The longer she is on it, the worse her sleep patterns are affected, too.  She will be taking some melatonin tonight so we both can sleep a little better.

With the combination of chemo and DEX, her appetite has been next to nothing, as well.  She has gone from about 43 lbs to 39 lbs.  (Olivia, our little Amazon child, now weighs more than Madi.)  Mrs. Heather, her nurse on Saturday, ran a quick check on hydration and electrolytes just to make sure all was still good.  They really do take great care of our kids at the Center.  I'm thinking her appetite will turn around tonight or tomorrow.  We have spring rolls, pizzas and taco meat in the freezer ready for those cravings that might come along. 

Keep the prayers coming!  We really do appreciate them and know they help.