Another Milestone for Madi

Today marks another milestone for little Miss Madi! Chemo ended about 5 months ago.  Now that cold and flu season are winding down, we are hoping to finish her IVIG treatments this month.

This is pretty major! Why? Because if her immune system is working well enough on its own, and she no longer needs to receive IVIG......   she no longer has a need for her port!! That's right!  No more port means no more restrictions and fewer worries.  Our little girl can really be a normal kid.  (Well, as normal as the rest of the family, anyway.) She's already had blood drawn from her arm a couple of times to make sure she can do that.  (The girl has some great veins!)  So, no worries there!

So, either in May or June we will have some extra blood work done to see how her little body is doing on its own.  From there, we will be able to schedule her appointment to remove the port and get on with life. Timing is perfect with summer just around the corner, too! Say a few extra prayers for us as we see how the next couple of months go.  I'll be keeping you all posted!

A Little Update On Madi

Madi's been doing well!  She's about four months out and sometimes it's amazing the difference in her.  If you asked her before treatment ended how she felt, she would always say 'good' or 'fine'.  And really, she did - compared to how she had felt for the previous months during heavy treatment.

Now you can ask her how she feels and you'll get 'REALLY good!' as a response.  It's a great and unexpected change!

She's able to keep up with her siblings a little bit better these days.  And she's always up for any activity.  The timing couldn't be more perfect now that the weather is warming up.

Madi is still being monitored closely by her group of doctors.  Something that definitely gives Dad and Mom some extra piece of mind.  Blood work is done every two weeks (for now).  She is also receiving her IVIG (immune therapy) to keep her compromised immune system strong during cold and flu season.  We also give her supplements that have been cleared by her doctors.  

So, once a month we head over to the treatment center for several hours of IVIG, art therapy, playtime and candy for the little ones.  I go fully prepared to do some work - although, I rarely get much done.

Other things that have been progressing for Madi?  At six months out from the end of treatment, Madi will have the option of getting her port out.  To say the least, she is looking forward to it.  It doesn't bother her, unless it gets bumped, but it does come with some restrictions that would be nice to not worry about any longer.  In order to get that port out, she has to be okay with getting blood drawn from her arm.  Once she found out what was required, she was ready to start practicing.  

This girl doesn't seem to be intimidated by much of anything!

Being a mom, I certainly have concerns as we move forward.  I liken it to being a first time parent and going straight to panic mode whenever anything happens.  You probably know what that's like, right?  "The baby has a fever!  Should I call the doctor?" or "I know head wounds bleed a lot, but is this too much?" or "Does that cough sound worse today?  Is that a wheezing sound when he's breathing?"

Only mine sound like this now.... "She just fell asleep in the middle of the day.  Is it because she had a sleepover a few days ago, or is she getting sick?" and "Hmmm.... is she looking pale or is that her normal coloring?" and "How long has that bruise been on her leg/arm/body?  What color is it?  Does it look like it's healing?" and my favorite "Where did that rash come from!"  It's a new place for me to be when my usual MO is "Suck it up, sweetie!  It's just a {fill in the blank}.  You're going to be fine."  I'm learning to adjust!  

There's been some crazy energy swings lately, so the doctor humored me and ordered some extra blood work.  At this point, everything continues to look good.  Keep praying she continues to do well and can leave this part of her life in her past.  Thanks for all your concern and continued request about Madi and her health!

  

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**

a small step back

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

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

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

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

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

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

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

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

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

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

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.

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.

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!

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.

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.

changes and a little prep work

Things have been changing.  It's not necessarily good or bad, it's just different.

Steroids have given our little one a belly and some chubby little cheeks.

The treatments of Vincristine make her hair fall out.  We got down to about 1/3 of her hair left and decided to just cut the remaining hair.  Now we no longer have to sit and brush her hair several times a day to keep it from knotting up while she is sleeping.

She also has a massive increase in appetite.  We joke that she is like a little pregnant woman: she gets hungry, she wants something very specific, and she wants it now.  She has woken me up a couple of times in the night wanting food.  Tacos, pizza, yogurt and ice cream are the most requested items.

Another change, is her personality.  We can't wait to get our talkative 5 yr old back.  Right now she is so quiet she rarely says anything unless it is to ask for something to eat.  Several parents have told us they 'got their child back' after the steroid were ended.  Looking forward to it!

Today we spent some time at the doctor's office.  Our first phase of treatment is 28 days long - beginning with a lumbar puncture and bone marrow sample and ending with a lumbar puncture and bone marrow sample.  Madi is currently on day 24.  To get ready for her procedure on Thursday, we needed a number check to see what she might need in preparation.  All that was needed was one bag of blood.  And, since it was 'munchy Monday', she got to have a Steak 'n' Shake cheeseburger during her transfusion.  Happy little girl!

 Be praying that things go well on Thursday, please.  I'll update as soon as I can after we get home.  Have a great night!