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!

perfect attendance and a delay

Last week, Madi had zero appointments.  Even better?  She was strong enough to attend school every day that week.  This is her first full week of school since August!!  Out of curiosity, I looked at her attendance record online - she has missed 266 days this year.  Not the kindergarden year we had planned, but better than it could have been.

We're learning to take the bad with any good that comes our way on this journey.  Unfortunately, Madi has a delay in treatments right now.  She went in Saturday morning to get her chemo.  All of her treatments are count dependent because of the level of methotrexate she will receive.  Platelets have to be 50k and she was at 44k.  We'll be heading back in on Wednesday of this week to see if her numbers have gone up.  If not, she will receive the vincristine she needs and we will schedule another date to receive the methotrexate.  Dr. Rob has assured us that this is 'normal'.  Just a little bump in the long road she is on.

Madi has started back on physical therapy sessions.  It's amazing how much this helps her fight the side effects the medicines have on her body.  While she might not get sick, her balance is a little off, her muscles are weakened and the ligaments in her legs tighten up.  All things that can be fixed.  (We've become very grateful for modern medicine and heath insurance over the past several months.)  She enjoys the challenge PT gives her and she loves her therapist.  Win-Win.

Keep praying!  If those numbers can get up where they need to be, we can keep treatments going.

doing good

Today was just a 'quick' number check for Madi.  When we are able to go in on Tuesdays or Fridays, Madi usually gets to spend a little time with Tasha, the Art Therapist.  She loves this arts and craft time - she's a lot like her momma that way.  Here is todays creation.

Next week, I'll take her back to the Pratt Center for some PT.  She's doing pretty good right now, but she's still week.  On Wednesday, she goes in for an LP and chemo treatment.  Her treatment is number dependent, so pray that her numbers stay good and she has no delays.

Numbers for today:
WBC - 4.2
Hgb - 12.0
Plts - 420
ANC - 1974

Remember that the kids are collecting change until this Friday (Feburary 22).  Feel free to contribute to this.  Also, Kevin is still collecting donations for his 5K with the Leukemia & Lymphoma Society.  This can be done on line or talk to him about other types of donations (check/cash).  A big 'Thank You' to those of you who have already helped us out with these!

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!

good to go

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

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

numbers

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

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

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

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

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

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

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

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

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

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

Little brother along for the ride.

23rd was her blood test.

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

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

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

***Update***

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

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

Pray, Pray, Pray!!

results

We got the best news possible today during our consultation with Madi's oncologist - her little body responded well to the treatment she received during the past month.  Praise God!! Time to celebrate!

Gretchen, Madi and Olivia

So, what does that mean?

Well.... Madi is considered to be in the Average Risk (AR) for ALL.  This means -
 *over the age of 1 yr and less than 10 yrs
 *initial white blood cell count was less than 50,000/microliter
 *none, or only a few leukemia cells were found in spinal fluid at diagnosis
 *the leukemia cells do not have genetic patterns specific to Very High Risk ALL
 *the leukemia has responded quickly to Induction chemotherapy.

Does that mean this all ends here?

Nope.  The game plan for Phase 2 of her treatment will last for the next 28 weeks.  This Phase is called post-Induction were the doctors try to get rid of any remaining leukemia cells to keep the leukemia from coming back.  This phase is broken up into 4 portions: Consolidation (4wk), Interim Maintenance I (8wk), Delayed Intensification (8wk), and Interim Maintenance II (8wk).

We have a total of 26 months until this journey is complete and we have only just finished our first month.  PLEASE KEEP PRAYING!

How is Madi doing?

Madi is doing really well!  She is starting to come back around to our fun, smiley little girl.  She is very weak and needs help doing small things like going up and down stairs and getting up from sitting on the floor, but she is working hard to get back to doing everything on her own.  Her appetite is still up from being on the steroids, but that could go back down at any time.  She still needs to rest most of the day; however, most of it is spent just laying down and not actually sleeping like she was this previous month.

Her usual spot in the living room.

There have been a couple of side effects from the chemotherapy that have been a bother to her.  The biggest ones have been oral sores and constipation/gas.  We are dealing with them as best we can.  It's nice that she is young and can still cuddle up on my lap without hurting me, since that seems to be the best remedy to date.  Who doesn't want their mommy when they are sick?!

How are Mom and Dad doing?

We are holding up.  I think I was more worried/anxious to find out the results today from the doctor than I was the first day we got the diagnosis.  Initially there is nothing that one can do to change the diagnosis.  However, after a month of going through treatment to find out she didn't respond well, meant the road ahead could have been much rougher for Madi.  We thank God for answered prayers.  Kevin and I are still able to stay pretty positive at this point and hope to keep it going.

So... the next 28 days consist of oral medication (6-mercaptopurine) every evening, LP's on days 1, 8 and 15, and a dose of Vincrystine on day 1.  This will all start on Thursday.

We want to thank everyone for the many prayers, cards, presents, food, kind words, babysitting and just general support over the past month.  There is no way Kevin and I would have been able to get through this without the love and care everyone has shown.  It really means so much to us the love that has been shown to us but also the love that has been poured out on all our kids.  We've been so blessed!

Love to you all!

**If you want to be alerted when I post updates on this blog, please remember to sign up for the email notifications.  Just put your email address in the box above that says 'Follow by Email'.  I don't always remember to post on Facebook or send out an email when I'm done posting.  Also, feel free to share any and all posts with friends and family.**

a 'normal' week

We have been trying to find a balance in our lives between taking care of a child who is ill and keeping things normal for everyone.

Going to the park I found by taking a wrong turn.  We spent some time swinging...

 and then sitting on Papaw's lap on the bench after my legs fell asleep in the swing.

 Trips to the mall.

 Getting a new hat and new doll can really wear a person out.

 The other two kids were still wound up and ready for the next stop.

Yesterday (Thursday) was our treatment day.  She is really doing a good job adjusting to the routine at the doctor's office.  We check in, wait for them to have a room ready, prep and then access the port, blood draw, chemo in, wait for blood results and then either get necessary blood/platelets or de-access the port.  She is still afraid of the needle hurting when initially accessing the port, even though she tells us afterward that it didn't hurt.  She also DOESN'T like anything sticky on her skin - no tape, no band-aids, not even Press 'n Seal.  We can avoid most of the sticky stuff, but the needle is a must.  Fortunately, (or unfortunately) she will get used to this with time.

According to yesterday's blood results, Madi is no longer neutropenic.  She scored a 527 on that scale!  A nice change for her to be able to eat all the fresh fruits she loves.  We will also need to head back in on Monday to make sure her hemoglobin and platelet numbers are where they should be in preparation for her lumbar puncture and bone marrow sample procedure on Oct. 4th.

Keep praying!

it's a good day

Madi had her third treatment today.  It's really hard to believe it's been a little over 3 weeks since we got the diagnosis.  Although we still have a long way to go on this journey, it's nice that time hasn't seemed to slow down or drag along.

There's not a lot to report today.  (A good thing in my mind!)  She was able to get her Vincristine -which only takes a minute or so to inject.  We then stuck around for a little over an hour to get the blood results to see what her numbers were.  Good news in that department, too!

WBC: 0.5
Hgb: 9.4
Plts: 90
ANC: 45
(check out the cheat sheet page to see what is normal for her age)

Numbers aren't the best, but they are good for Madi.  Her ANC went from 0 to 45 in just a couple of days.  We need it to be above 500 for her to be off her neutropenic diet.  It's moving the right direction, though.

One big hurdle we have yet to overcome is the initial port accessing.  Can't really blame a 5 yr old for being upset when someone comes at them with a needle.  The doctor's office supplies us with linocaine cream to numb the area.  Now it's just a matter of getting over the mental aspect.  That will just take time.

So..... Keep praying!  We appreciate everyone helping us through this.  And since every post needs a picture....

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!

results

(Sept 6)
Best case possible for Madi. It is ALL (Acute Lymphoblastic Leukemia). They r going to start treatment tonight and Lord willing we will be going home on Monday. Kevin is staying the night at the hospital tonight so I can get a better night's sleep and get the older 2 ready for picture day at school tomorrow. Keep the prayers going!!