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!

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!

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!!

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.

working hard

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

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

milestones

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

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

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

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

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

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

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

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

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

did you know we have other kids?!

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

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

Happy Birthday, Liv!  We love you very much!

~~~~~

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

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

L is for ......

(originally posted on this too)

School has started and we've been trying to get into the swing of things.  You know - waking up at a good time, getting dressed instead of wearing our pjs or swim clothes all day, keeping up on the laundry, signing papers that need to be returned and getting that nasty homework done on time.

I've been looking forward to having 3 (!) kids in school this year.  Hard to believe!  Do you know how easy 2 kids can be?!?  I have a list of projects that just keeps getting longer and longer.  Things like painting and rooms and presents and just miscellaneous fun 'stuff' to do.

With our third child in kindergarden this year, we've been getting to see all the 'new' things through her eyes.  She brings home her paper from school and shows us all the 'homework' she gets to do.  We get to hear about her teacher and all the new friends she gets to make.  We get to learn that L is for things like Lollipop, Letter, Light and Lemon.

On Tuesday Sept. 4th, my husband and I learned that L is also for Leukemia.

Madi - 1 week before diagnosis

Our beautiful little kindergardener had some blood work done that morning to find out the cause of the bruising and lethargy she was dealing with.  By 2 pm we had a call from our pediatrician telling us to go meet with a pediatric oncologist and be prepared to be admitted to the local hospital.

A whirlwind started as soon as we were finally admitted to the hospital.  Thankfully, we were blessed with some wonderful and understanding nurses.  One nurse in particular, Ms. Janet, became Madi's buddy and cared for her in more ways than just making sure medicine was taken on time and vitals were as they should be.

All these new, and somewhat scary, situations and experiences for our little girl to have to endure.  Being poked and prodded by complete strangers, being carted to different treatment/procedure rooms, having a port put in, having to take 'yucky' medicine and just feeling crummy overall really started to take a toll on her by Friday.  That morning she looked at me after taking her medicine and said, "I really don't want to do this anymore."

We have been home since Sunday and coming home never seemed sweeter.  Our lives are busy with one more thing added to the mix, but we have some wonderful friends, family and even strangers surrounding us with love and support.

The point of this post is not to make you feel sorry for us.  While this isn't the diagnosis we wanted, the prognosis is excellent.  We found through testing that Madi has ALL, a very common and treatable form of Leukemia.  Her age, gender and several other factors are in her favor.  She is responding well to treatment so far and is having few side effects.

The point of this post is to ask for prayers.  Many, many prayers.

We are keeping our minds on the positives and not dwelling on the negatives.  We really are okay.  While we know there are many rough days ahead, focusing only on the bad will make this whole experience even worse.  Kevin and I are taking any opportunity and making sure something is gained or learned by some or all of the kids.  Even Kevin and I are growing in many ways at this time.  Most importantly, Madi is learning at a very young age to let her light shine.

So, projects will come - eventually.  Once we get into our new 'normal', I'm hoping to still do projects and crafts to help keep me sane during this time.  (Kevin would tell you I lost 'it' a looonnggg time ago, though.)  I've got several in progress now and just need to finish up - my life's story.

Keep us in your prayers!

first blood draw

(Sept 11)
As many of you know, Madi is now home. She was so excited to be leaving the hospital!

She is happy to be home, but tires easily. Right now our big issue is getting her to take her meds without fighting the issue, but it has gotten better.

Today we go in for some blood tests to make sure numbers are where they need to be. I'm hoping to get a better idea of our schedule in the coming weeks, t

oo. Keep praying. I don't see anything being a problem today other than when the nurses come in with the needles. We have some cream to put on her skin to numb the area, but that won't make much difference psychologically to a 5 yr old.

home

(Sept 9)
Madi got to come home today!!! It was great to see everyone at services tonight while Daddy played nurse tonight. She's pretty clingy tonight and fell asleep on my lap, but she was happy to get home earlier. Thanks for everything!!!