new year, new meds

Hope everyones Christmas and New Year holidays were as good as ours.  Madi had a break in treatments that allowed us to do our usual traveling to see and spend time with family.

Wilson side of family - all 25 of us!

We always have a great time and enjoy being able to visit will friends we don't get to see often when visiting the church family there, as well.

While Madi's schedule didn't include chemo we did have to go in for a blood check (CBC/CMP and lipase) on the 28th.  This was actually the first time the older two kids got to go with us.  

I think they had fun and Madi liked having the big kids to play with for a change.  Caroline walked around like she owned the place and Gretchen worked hard to avoid all visual contact with needles.  (G and needles don't mix... to say the least.)

By the end of appointment, something occurred to me - I think my younger kids may be getting a little too comfortable at the Pratt Center.

Numbers for the day:

WBC - 4.5

Hgb - 11.7

Plts - 293

ANC - 2385

Madi got to start 2013 off with a bang.  January 2nd got to see the beginning of new medicines and new procedures.  That morning she got to take her first of 14 doses of 4mg dexamethasone (DEX).  This is not one of our favorites.  We were in the pediatric cardiology department at Mercy by 8 am for an echocardiogram.  (One of the medicines, doxorubicin, has the potential to thin the lining of the heart and they needed to make sure all was well before administering it to her.)    She was then at the Pratt Center to get accessed and have a blood draw at 9:15.  We had just a little time to kill, so she got to play with Mr. Tom, the tutor provided by Friends of Kids with Cancer and I got to work on my Bible lesson for that evening.

It was then on to Test & Treatment at Mercy Children's hospital for an LP at 11:30 arrival at 10:30.  

I always get somewhat of a reality check on procedure days.  When all the machines are hooked up to her, crazy concoctions are being pumped into her little body and I sit waiting for her to wake up, it  brings home the fact that she really is sick and has a battle to fight.

A special thanks to Stewart and Johnna for coming out and watching the kids for me.  If it had been only the little ones with me, I might have tried taking them.  I just couldn't fathom having all five kids along for the ride, no matter how good they can all be.  7 hrs is a long time for any kid.  My friends swooped in and saved the day, and my sanity!

Numbers for the day:

WBC - 11.4

Hgb - 12.0

Plts - 269

ANC - 9810

About all that happened on Thursday was this:

Friday was a bit better and she even managed to go to school.  A huge surprise for both of us, I think.  She was exhausted by the time she got home, but she has yet to go to the school nurse during the day and ask to come home.  So proud of her!

Saturday saw us back at the Pratt Center for another chemo treatment.  This time it was Peg-asparaginase.  It was an hour long push, so we decided to get comfortable with our pillow, a warm blanket, goldfish and one of the iPads available to the kids at the center.

Numbers for the day:

WBC - 6.7

Hgb - 12.7

Plts - 341

ANC - 4420

Sunday found her back on the couch or in Daddy's recliner watching TV or napping.  She also had her first vomiting episode as a result of her treatment.  Nothing too violent, but another reality check for us all.  She then asked for chocolate milk and beef jerky for a snack soon after that.  (I'll wait.  Go on and have your own little 'episode' now that I shared that.)

Today, Monday, she is home laying around for the most part with little spurts of energy here and there. We will head back over to the Pratt Center Wednesday for yet another treatment.  (sigh)  I know Madi is getting tired of this, but she is being a trooper!  Thankfully, she takes her last of 14 doses of DEX on Tuesday night and then will get a 7 day break after Wednesday's treatment.

Back to the dexamethasone.  This little pill was part of Madi's first month of treatment.  (blah!) It's a different dosage this time, but still has the same results.  After just one dose, Madi was withdrawing and not talking, she had anxiety all morning, and overreacted to just about everything.  All of this has evened out a bit over the past few days, but she is still not our bubbly Madi.  The longer she is on it, the worse her sleep patterns are affected, too.  She will be taking some melatonin tonight so we both can sleep a little better.

With the combination of chemo and DEX, her appetite has been next to nothing, as well.  She has gone from about 43 lbs to 39 lbs.  (Olivia, our little Amazon child, now weighs more than Madi.)  Mrs. Heather, her nurse on Saturday, ran a quick check on hydration and electrolytes just to make sure all was still good.  They really do take great care of our kids at the Center.  I'm thinking her appetite will turn around tonight or tomorrow.  We have spring rolls, pizzas and taco meat in the freezer ready for those cravings that might come along. 

Keep the prayers coming!  We really do appreciate them and know they help.

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.