last treatment of '12

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

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

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

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

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

trying to catch up

It's been awhile since I last posted, and I apologize for the delay.  Life is very busy, but especially this time of year, it seems.

So, what's been going on.....

Madi had her last treatment on the 28th.  Pretty uneventful.  Since it was at 10am (a later time than usual) I was able to splurge and grab a coffee on the way to the Pratt Center.  To easy my guilt, I got the kids each a cake pop.

Once Madi was accessed, she was able to spend a little time with Ms. Jill doing a couple of crafts.  It always gets her involved with at least one of the other patients and lets her see there are others going through some of the same things she is.  It helps.

The day after treatment, was a trip to the dentist.

Ever heard of the saying 'adding insult to injury'?  Well, poor little Madi just has a couple of teeth too many in that pretty little head of hers.  The dentist has decided to leave all those pearly whites where they are, for now, and re-evaluate the situation at her next cleaning in March.  We are really hoping she will be able to wiggle the baby teeth out before then, or we will be scheduling an extraction.  A very minor problem usually.  ( I had several teeth pulled growing up, so I know it's not a big deal.)  However, when it comes to Madi having teeth pulled, there are a few more steps involved.  Phone calls between doctors, blood counts done, possible transfusions...... As I said, we are hoping she gets them out on her own.  

Birthday party over the first weekend in December.  Lots of fun!

Tuesday, the 4th, was another physical therapy session.  She is doing so well that we are going to take a break until next year.  There are still things that she gets to work on at home until then; however, it will be nice not to have to make the trip over to Olive and New Ballas for a few weeks.  (We are definitely doing our part to keep the oil companies in business.)

Our family was blessed with a stomach bug this week.  Great fun! (I hope you all can sense my sarcasm.)  Thankfully, it skipped a couple of us - Madi being one of the lucky ones.

Friday, Madi went in for another lumbar puncture.  It's been a little while since she has been to Test and Treatment.  A very good thing, in our minds.  The purpose is to test the spinal fluid and see how the treatments are working for her.  She also received another chemo dose - methotrexate is now at 250 mg.

Daddy took the day off and went with her this time.  This was the first solo run for Kevin.  We never know whether to give Madi several days to get use to a change in her normal routine, or if it is better to spring it on her at the last minute.  I really don't think there is a right answer to this.  This time we told her well in advance that it was Daddy's turn to take her, and we got to hear her cry about it for several days.  While I really wanted to break down and just take her myself, she needs to know that Daddy can take care of her just as good as Mommy.  It worked out and she did fine.  She really had no choice since it was our decision to make.  

It was somewhat humorous on my end, though.  I kept getting text messages asking if things were happening the right way and if certain things were okay.  Text from Kevin: Madi assures me that his is normal and we should ride all over like this.  Yep, 'surfing' is OK.

Bonus - Santa stopped by for a visit.

I was able to talk Madi into letting me buzz the remaining fuzz off her head one evening.  Since the weather is getting cold, she is wearing hats almost all the time outside of the house.  I got tired of seeing all the fly aways.  She seemed to have fun during it and now she doesn't have to worry about looking like she has a bad case of static.

Today, Madi went in for an hour evaluation.  This basically gives everyone a cognitive baseline for her.  If in, say, five years something starts to change or there is a red flag of some sort, we will be able to compare the baseline to whatever the new issue is.  Once she turns six, she'll have a couple more appointments to complete the evaluation.  We did find out today that she is at a reading readiness level equivalent to 2nd grade.  Not sure what that means exactly, but it sounds good for a kindergartener, huh?

Next treatment will be December 18th.

Please keep praying for our little girl!  We fully believe in the power of prayer.  There are times when we feel like we have been getting so much good news, that eventually we are bound to get some bad.  No matter what happens, we know God is in control.

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!

lessons from the dr.

Amazon

... When you think things are bad,

when you feel sour and blue,

when you start to get mad...

you should do what I do!

Just tell yourself, Duckie,

you're really quite lucky!

Some people are much more...

oh, ever so much more...

oh, muchly much-much more

unlucky than you!

(© Dr. Seuss 1973)

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.

physical therapy

Madi got to add physical therapy to her 'to do' list for the week.  Laying around for a little over a month depleted her leg and core muscle strength to the point that a little help was needed.  Last week she refused to do about half of what the therapist asked her to do during her evaluation.  Lovely.  This week went much better, once I got her detached from my leg, and she was even talking at the end of the session.

 Most of what Madi is to work on centers around propulsion - jumping, skipping, climbing stairs/rock walls, running.  She also gets to work on balance and a lot of exercises to help her tummy and back muscles firm up- wheelbarrow, crab walk, balancing on one foot.  Today was a lot of fun for her and she seems excited to go back next week.  Hopefully, that will be the case when that day roles around.

Sawyer slept through most of the appointment.

Since some of the schools are polling locations, the kids had the day off.  I'm often grateful that we have some pretty well behaved kids.  (They still will be little stinkers at times, but, overall, they give us little trouble.  In public.)  Many times it is just easier for me to load all the kids up and take them with me rather than find a babysitter.  Easier, not quicker.  Voting went so well, I treated the kids to their choice of drink at McDonald's.  Did you know drinks easily add $8+ to our total?  Yep.  Big treat for my kids since they usually get to choose water or water.  :)

I had one gentleman come up to me, complement me on how good the kids were and then promptly tell me he wouldn't trade places with me for anything in the world.  Ha!  That's quite all right.  I'm happy to keep my lot in life.  Very happy.

the past 2 weeks

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

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

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

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

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

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

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

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

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

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

first day of school

That's right.... Madi is back at school!!!  How amazing is that?!

I loaded all the kids up and headed to the school Monday morning to drop the oldest 3 off for the day.  I fully expected to get a call from the school saying Madi was ready to come home around noon, but she made it through the WHOLE day.  She was even able to tough it out Tuesday, too!  Today her cold has finally brought her down with a stuffy head and sore throat.  I'm so proud of her for pushing herself to do all that she is able!

For those days Madi isn't able to make it in, we are doing a few things at home to keep her learning skills sharp.  Soon she will be able to participate in the Homebound Schooling our district provides.  (I cannot say enough good things about the school and faculty at Geggie.)

Tomorrow we have another LP scheduled and chemo will be administered at that time, too.  Keep up the prayers, they definitely make a difference. 

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.

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!

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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.

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!

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....

a little blood check

We are constantly having to get Madi's blood checked to make sure numbers for hemoglobin, platelets, red blood cells and several other things are at levels acceptable for treatment.  Yesterday was one of those days.  It was also the first time I had the two littlest munchkins with me.  The office is set up like a child's dream.  As time goes on, I'm sure the kids will get bored; but for now, they had a blast.

Since her platelet level was low Thursday prior to her LP, Dr. Rob wanted us in yesterday for a quick check.  Her numbers went from 32k to 6k in just 4 days.  Platelets were a must!  Unfortunately, the blood bank was low and we had a bit of a wait until they could get some to us.  No bit deal.  Madi sacked out with a pillow and warm blanket.

 Her position didn't change much after we got her hooked up. :)  It really made it nice for her to be able to just sleep through most of the day.  (A little funny for you all - The platelets in the bag are a yellow color.  Sawyer asked why they were putting tinkle in Madi as the nurse was connecting her lines. Even the nurse got a good chuckle.  Ha!)

None of Madi's numbers fall within the normal range.  Most are just at a good level for the situation.  The other thing we really have to keep an eye on right now is her number of neutrophils.  When we entered the hospital, she was at 40.  She is now sporting a big fat 0.  While this is a 'bad' thing, we are very grateful cold and flu season isn't in full swing.  (I'm telling you, people - life is all about perspective!)  She has to adhere to a special diet and we have to watch for fever and cold symptoms, but nothing more.

Since we are headed back in on Thursday, today is a pj wearin', movie watchin', book readin', coffee drinkin' kinda day.  I feel like we have been going somewhere constantly (even if that isn't really the case).  Grandma and Grandpa came for a visit and helped us keep up with the house work and entertain the kiddos.  Nonnie is going to visit Wednesday and Papaw will be coming a day or so later.  My kids have such wonderful grandparent!