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!

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.

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.

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!

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.

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!

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.

last treatment of '12

Madi had her last treatment for this year on the 18th.  Her numbers have remained up enough to keep receiving her treatments, which is a huge blessing.  She's been more tired lately, which is understandable.  I've also noticed a bit more bruising, which we just have to keep an eye on to make sure they show signs of healing.

We've been very proud of her determination to still go to school as often as she can.  I rarely ask her how she is feeling of a morning.  Maybe that sounds a bit callous.  However, I've found that if she doesn't think about it or dwell on the possibility of not feeling well,  she feels good most of the time.  As with most 5 yr olds, she isn't shy about letting me know if she truly doesn't feel well.  After treatment on the 18th she was too worn out to finish the school day.  I guess she knew what she was talking about.

Along with being more tired than usual, Madi is a bit more emotional.  Little things will get the tears flowing.  I've also had to calm some small fears and help her to realize she won't break if she does get hurt.

Who can blame the little girl?!  (Although, the whining can be a bit excessive.)  We are trying to minimize her desire to manipulate family situations to fit her wants.  I'm sure we give in a bit more often these days, though.  When you have 4 other kids, you toe the line to limit the potential for resentment.  It's something that is very hard as a parent.  We also have to be careful that we don't allow the other kids to get the upper hand and work situations too much to their benefit.  Some days are easier than others.  Some days I feel like I'm caught in a meat grinder.  Fortunately, we have some really good kids with compassionate hearts who are willing to learn how to best serve others.  Lots of extra learning experiences for all of us.

On a separate note - Kevin and I were the recipients of an anonymous gift the other day.  We did want to be able to extend a huge 'Thank You!' to whomever and let them know how much we appreciate this.  It's been set aside to use toward gas after our holiday travels are done and we are once again going back and forth to the Pratt Center.  Such a blessing!!

thanksgiving

Our Thanksgiving holiday is upon us.  A time to reflect on all the blessings we have in our lives, extra time spent with family and copious amounts of food placed before us on which to gorge ourselves.  Tradition.

While I've always considered myself and my family to be blessed, sometimes it takes a crazy occurrence in life to allow one to see how true that fact is.  So many, many things that have been brought to our attention during our time with Madi's illness.  I could sit here and try to list all of them, but I won't.  (You can thank me later.)  One I wanted to acknowledge on the blog, though, is the support we have received from all our friends, family and even complete strangers.  There is no way we could go through this time with out everyone holding us up and cheering us on.  Thank you!  God has blessed us beyond measure!

So..... What's going on with Madi?  Her treatment was this past Monday with Vincrystine and an increased dose of Methotrexate.  She really has been handling everything remarkably well.  Her spirits are up and so are her numbers.  (Funny story - When praying one night at the supper table, Madi was, of course, mentioned.  As soon as Kevin finished, Olivia looked at him and said, "We don't need to pray for Madi anymore.  Her numbers are fine."  Amazing what they pick up on, huh?)

Madi has to wait for her blood test results before she can have her treatment.  During that time we work on school, play games, play with toys or watch movies.  This time she got to go in the craft area to paint.  A great way to pass the time!

 She also got to decorate a canvas with gems and letters.  The activities are definitely fun for her, but they also help her work on fine motor skills.  Double bonus.

 Since it was Munchy Monday, the doctor's office had Imo's pizza brought in for all of us in the office to eat.  While Imo's isn't my favorite, it was free and filling.

Blood levels:

WBC - 4.0
Hgb - 11.6
Plts - 376
ANC - 1700

Tuesday was physical therapy.  They really put her through her paces!  Treadmill frontward, backward and sideways.  She even sprinted for 20 second intervals.

Elliptical front and back for several minutes each.

A few leg presses.

A little rock climbing.  Ms. Jenn not only had her going up the wall, but also going from one side to the other.

 

And whatever this is.  She also did crunches and a lot of rolling on a ball for balance and core muscle control.

Physical therapy has been a lot of fun for Madi, which helps in so many ways.  She is excited to show the rest of the family all the things she does in her sessions and always ready to go back for more.  Her next appointment will be in two weeks, she is improving so quickly.  

Madi's next appointment is next Wednesday.  So, until then, have a safe holiday and enjoy all the blessing (large and small) in your lives.  Love to you all!

phase 2.2

Madi with her 'best friend'

Today started our second part of Phase 2.  (The first part took place 10/11 to 11/7.)  This part consists of doses of Vincristine and increasing doses of Methotrexate administered via her port.  I provided a link to Wikipedia so you can see for yourselves what the uses and side effects are of each drug.  During this time they will continue checking her various blood numbers and also do CMP and lipase lab work. Treatment will take place every 10 days with another LP on day 31.

Numbers for today:
WBC - 3.4
Hgb - 11.5
Plts - 369
ANC - 1598

I totally bribed my daughter to not scream and cry during port access today, and it worked.  So much nicer to have her sitting on my lap squeezing my hand, instead of restraining her kicking feet and flailing arms.  She has told me each time that she can't feel the needle since we put a topical cream on the access site to numb the area.  If it doesn't hurt and just looks scary, I wondered if she would be able to control some of her reaction and fear.  She did an amazing job and was even joking with us while it all happened.

Her reward was an ABC jewelry fashion design kit she had spotted one other time in the prize cabinet at the Pratt Cancer Center.  She has already had some fun creating.

Appointments contain a lot of waiting time because we have to get number result before drugs are administered.  Some days we need to just chill a little by watching a movie, looking at books or playing on an Ipad the Cancer Center has for the patients.  Today we spent time going over some of her sight words.  She's doing such a good job with her reading and really enjoys learning.  She pulled 'Green Eggs and Ham' off the shelf the other day and read half of it to me with little trouble!  There are just a few words that she continues to have trouble with.   Hopefully, she will be able to remember 'are' now.

'What does a pirate say?'

Things we are dealing with right now?

*Madi seems to be having some separation anxieties and can be very clingy most of the time.  Getting her to go to school on days that she doesn't have an appointment of some sort or isn't recovering, is proving to be somewhat difficult.  Something we are just going to have to work through.

*Also, Madi's appetite is pretty much nonexistent right now.  After all the food she was able to eat while on steroids, the amount she is (or isn't) eating can seem almost scary.  We are going to start supplementing her diet with some Pediasure to make sure she is getting the nutrition she needs.

I've been seeing a lot of posts on FB or such about what people are thankful for this time of year.  Top on my list is modern medicine.  This is something I've always been grateful for to relieve headaches, cure infections and help with labor pains.  This year modern medicine has a special place in my heart since it is helping to make one of my kid's future so much brighter.

the past 2 weeks

The past two weeks have been fairly uneventful - at least as uneventful as we can get around here.  We've been grateful Madi has had the energy to attend school a couple of days each week.  She has her moments of not wanting to let me out of her sight, but they are getting to be fewer as time passes.  She even rode the bus home from school the other day.  Big stuff!

Madi had Lumbar Punctures and Intrathecal Chemo on the 18th and 24th.  It's amazing how strong little ones can be.  She has been in good spirits after each procedure and walked out on her own both times.  Which was very helpful since I had the two littlest ones with us.

Part of our times was spent in the room with Madi.  They did such a good job for me: I just make sure I have the TV on and snacks on hand.

 The rest of the time was spent in the playroom down the hall.  It's really nice that both the doctor's office and the Test and Treatment area realize that we parents have kids other than just the patients we bring in.  Madi even felt like spending some time playing in the room before her last procedure.

After each procedure, Madi can take a little while to wake up.  But, she looks adorable while sleeping off the anesthesia.

We just completed week 3 of a 4 week plan.  Week 4 is an easy week for Madi since all we have to go in for is a CBC this coming Thursday and continue her 6-mercaptopurine pill 'til Nov. 7th.

Tuesday we will be headed over to a physical therapist to see what she might need to do to maintain her muscle and dexterity for the next couple of years.  Kevin and I are very hopeful that the therapist will be surprised with the progress she has made on her own.  (She is now walking up and down the stairs with little help from us or the stair rail.)  Even better, the elementary has a physical therapist that comes in each week that can work with her, if needed.

Starting Nov. 8th she will have 8 weeks of Vincristine and Methotrexate once a week.  She will also continue to have blood work done each week - CBC/CMP/lipase.  During this 8 week treatment, she will only have to have one LP.  (yea!) There will also be more potential for her to be neutropenic, but we will deal with that if/when it happens.

Did you know this will take us all the way up the Jan. 3rd?  Crazy!

Everyone has been a great source of encouragement and help to us already- thank you so much.  Please keep lifting Madi up in prayer.