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!