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.