Tuesday, January 29, 2013

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.

Monday, January 28, 2013

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.
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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.
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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!

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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.
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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!!

Wednesday, January 16, 2013

enter IVIG

We are still going strong with all of Madi's treatments and medicines.  We've been very fortunate/blessed to remain on schedule during cold and flu season.  All her numbers have remained at good levels with no need to get blood or platelets.

Madi ended her 7 day round of steroids (dexamethasone) on the 8th and then received treatment on the 9th.  I kept her home Wednesday night while everyone else went to church services.  My thinking - why drag her out in the cold if all she is going to do is sleep on the way there, have me carry her in, sleep all through class and worship on my lap, have me carry her out and then sleep all the way home?  (This scenario has happened multiple times.)  Also, do you remember me lamenting the fact that our little Madi goes silent during steroid treatment?  What a difference a day makes!  She was bouncing off the walls all evening, talking nonstop and couldn't settle in to go to sleep that night.  (Melatonin to the rescue!)  I was this (holding fingers up scant mm from each other) close to asking her to PLEASE be quiet for a little while.  Instead I just smiled and enjoyed the moment.

Treatment on the 9th went smooth.  She was pretty 'lazy' early in the day, but a lot of that is due to her not being able to get a deep sleep while taking steroids.  If you look closely, you will be able to notice a little puffiness in her face.  That went down quickly, but I'm sure it will be back this week.
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Numbers for the day:
WBC - 9.7
Hgb - 12.6
Plts- 427
ANC - 6460

Today, Jan 16th, Madi and I got to go back in for another treatment.  She started steroids again this morning and has a total of 14 doses.  Her appetite has been back up, but she only wants certain foods.  We've tried to anticipate what she will want and keeping the pantry stocked.  She hasn't lost any more weight and hopefully she will gain a little bit back in the next couple of weeks.

So, the title of this post contains IVIG.  Ever heard of it?  I hadn't until the call from Dr. Rob on the 10th saying it would be good for Madi to have.  Basically, IVIG will boost Madi's antibody levels and help her fight infection since the chemo has depleted her own natural levels.  Not a big deal, but it did add about 3.5 hours to the day.  I know I've said it before, but I am SO grateful for our friends in the St. Louis area.  Lezlie was kind enough to keep the 2 littlest ones for me, as she has in the past.  It made her day a little more complicated, I know, but it was a huge help for me to be able to focus on Madi the whole time.  I was even able to sneak in some learning/school while we were at the Center.
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We made it through a couple of educational games for kindergarteners, Brain Quest for 4-5yr olds and some of the Brain Quest for 1st Grade before she was ready to lay down and rest.

Since we arrived at the Cancer Center at 9:45am and didn't leave until 2:45pm, lunch was purchased at the little cafe on the first level.  Not bad.  Not super good.  Edible and filling.  It had probably been in the warmer for a little while.
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Numbers for the day:
WBC - 1.1
Hgb - 10.9
Plts- 219
ANC - 180

Notice the big change?  Yep.  Those have definitely gone south.  It was advised that keep her in and away from large crowds at least through the weekend.  We can go in Saturday morning and get another CBC and see where she stands.  

Next week all she has is a CBC on Wednesday.  No more treatments or procedures until the 30th.  Hooray!!  If anything else happens between now and then, I will try to post and keep everyone up to date.



Monday, January 7, 2013

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

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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.
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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:
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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.
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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.