doing good

Today was just a 'quick' number check for Madi.  When we are able to go in on Tuesdays or Fridays, Madi usually gets to spend a little time with Tasha, the Art Therapist.  She loves this arts and craft time - she's a lot like her momma that way.  Here is todays creation.

Next week, I'll take her back to the Pratt Center for some PT.  She's doing pretty good right now, but she's still week.  On Wednesday, she goes in for an LP and chemo treatment.  Her treatment is number dependent, so pray that her numbers stay good and she has no delays.

Numbers for today:
WBC - 4.2
Hgb - 12.0
Plts - 420
ANC - 1974

Remember that the kids are collecting change until this Friday (Feburary 22).  Feel free to contribute to this.  Also, Kevin is still collecting donations for his 5K with the Leukemia & Lymphoma Society.  This can be done on line or talk to him about other types of donations (check/cash).  A big 'Thank You' to those of you who have already helped us out with these!

fundraiser

We have a couple of things we as a family are involved in that we would like to share with all our friends and family.  This seemed like the best avenue to reach everyone.

First, the kids' elementary is currently doing 'Pennies For Patients' - a youth program for the Leukemia & Lymphoma Society.  Most of the students are aware of Madi's illness at the school and this was an idea one of the students had to get the school involved.

Basically, all the kids in the school were given a box like the one above in which to collect spare change.  Donations can also be made in check form and given to us or credit card at www.schoolandyouth.org/gat.  If anyone would like to help the kids with this endeavor, just get any money to us so it can be turned into the school by February 22nd.

Second, Kevin has signed up for a 5K fundraiser for Leukemia & Lymphoma Society.  Actually, he is running in 3 5K races.  The first race will be on April 6th at Forest Park.  He needs to raise $750 to participate;  but, we would, of course, love to raise even more than that.  Wanna donate?  Kevin has a blog set up and it's ready for donations.  http://pages.teamintraining.org/gat/tsttnt5k13/kwisew  Or click on the widget on the right side of this blog.  I've been roped into keeping up with his new blog and maybe even making it a little more visually appealing.  At least Kevin didn't ask me to run with him.  (For those of you who really know me, you know the relief I feel!)  I will try to keep everyone up to date on how this is going - as well as everything else. 

Please share this information with others!  Every little bit helps in this fight against blood cancers.  Our life and Madi's could have been so much different if it weren't for research done by this group.  The money we raise will not only help Madi but so many more fighting cancer right now and in the future.

If you have any questions, feel free to contact us at madismilestones(at)gmail(dot)com.  

i knew i shouldn't have said it

Last Friday saw us at the Pratt Center for a final dose of AraC.  Such a relief for us to finish up the week strong.  She was tired that day, but she was able to attend school Monday thru Thursday that week.  Madi really doesn't let the leukemia hold her back much at all!

While we were waiting for CBC results that day, I was talking with one of the other parents.  We have met so many nice people/families that are going through the same struggles we are.  While 'comparing notes' the this mother was telling me about the hospital trips, headaches, delays and other trouble her daughter was having with her treatments.  She then asked how Madi was doing.  I always cringe when this question comes up.  (We have been so very blessed with the way Madi's body has handled everything so far, so I always feel like, at some point, something bad is just waiting to happen.)  I told her that Madi's treatment was going as planned and we haven't had any hospital runs, sickness or delays- definitely answered prayers.  As soon as the information left my mouth, I thought 'now something will happen'.

Fast forward to Sunday.  Sawyer woke up with a croupy (is that a word?) cough and some labored breathing.

Monday morning, his cough was worse, he had a fever, and he was really struggling to breathe.  A trip to the pediatricians was in order after the older 3 got on the bus.  Sawyer tested negative for RSV and was put on Zpac to help clear him up.  Lots of prayers on my part that this didn't travel to anyone else.  Monday night Liv was feeling tired and cuddled up on my lap.  Yep, she had a nice little 102° fever going on.  *sigh*

Tuesday morning both Sawyer and Liv were fever free and seemed fine.  (Well, S still had his cough, but he wasn't struggling to breathe.)  We had to head in to the Pratt Center for a CBC and a weekly checkup.  Quick in and out, right?  Ha!  Madi was in need of platelets.  No biggie, really.  It just adds about 2 hours to our time, so we got the platelets ordered and picked out a couple of games.

A little later the nurse came back to let us know that her hemoglobin was down to 8.5, meaning she would need blood soon, but we could put it off a couple of days.  Also, Madi was due for her second round of IVIG.  Blood takes about 2 hours.  IVIG takes about 3 to 4 hours.  Total of 6 hours since they have to do one at a time incase of a reaction.  I decided to push these off until Friday when I knew Kevin would be off work and I could go solo with Madi.

We always try to keep an eye on Madeline's temperature.  It's one of our first indicators that something is going on in her body that isn't right.  We left the Cancer Center with a last temperature check of 99°.  As she sat staring at her plate at supper time Tuesday night, I realized I should probably check and see where she was.  Quick trip to Walgreens to get a new thermometer for Madi, since I used the other on Sawyer and Liv, and we discover she is at 101.8°.  Wait a few minutes for a second check and she is at 102°.  Time to call the doctor.

Okay,  I'm getting tired of typing.....Long story short time.

We headed to the ER to get a blood culture and spend the night in the hospital.  They started her on antibiotics and were also able to get the unit of blood in her system that night while she slept.  The next day she got a chest xray and another CBC.  Kevin and I switched out that night so I could get some sleep.  (Madi has a tendency to go to the bathroom a lot when hooked up to IV fluids - day and night.)  Thursday, we were given the green light to go home right after lunch.

Did you know she didn't have a fever the whole time she was at the hospital?  A little frustrating, but I wouldn't change what we did.  All of it was for the best for Madi, and that's all that matters.

We are keeping a close watch on her now.  Today she was able to go in for her scheduled IVIG therapy and that should help her immune system a lot.  Next week we will go in for a weekly CBC and I'm pretty sure she will need platelets again.  I'm just very thankful that these needs can be met whenever they come up.  Plus, even though she had to spend some time in the hospital, she is still on track for treatments in two weeks to start up again.

She continues to be in good spirits as the day goes on.  Hopefully, she will be able to have a full week of school next week.

Keep up the prayers - we appreciate them so much!!

and repeat

This week has been pretty much a repeat of last week - minus the LP and fluid backpack.

She continues to handle the chemo with little to no side effects.  This is a huge thing for her since it allows her to have a more 'normal' life.  She's been to school every day this week except friday with a smile on her face.

We went in on Wednesday to get her chemo push and unit of blood as planned.  She takes all this in stride - it's amazing!  As soon as she was hooked up to the pump, she settled in with an apple and a movie to wait out the 3 hour timeframe.

She soon tired of just sitting and watching, so we went and go at game out of the cabinet.  It was a lot of fun watching her little mind work and get better at strategy.  She's a quick little girl!  Since Lisa had the two little ones, I was able to give Madi my undivided attention.  It's always fun to spend this time with her and forget , somewhat, the real reason we are sitting in this room.

Thursday was a quick chemo push, CBC and then on to school.  I'm so glad she likes school and will now go to her class willingly.

Numbers for the day:

WBC -  1.6

Hgb- 10.0  (up from 7.5 before transfusion)

Plts -173

ANC-1100

Friday was her last treatment for the week.  *sigh*  She was tired from the long week, and that translated into being emotional.  I was glad a friend wanted a play date and had Olivia and Sawyer at her house.  (As if Lindsay doesn't have enough to do.)  Anyway, Madi was in tears because of the upcoming de-access.  Not that she was going to miss the needle and line, but she hates having sticky things removed from her skin.  The tape that is put over the needle and access site is roughly 4"x4" and very sticky.  It took some reassuring, but Ms. Heather, her nurse for the day, was able to work with Madi and remove the tape without a fight and with minimal pain.  There are a lot of special people who work in this office!

Madi decided she was too tired and not wanting to go to school this day.  I was all for keeping her home the rest of the day so she could rest and recover.  Perfect school attendance was gone a long time ago and there is no reason to push her to go.  Soon after we got home she fell asleep while sitting on my lap.  Always good for Mom to get some cuddle time in.

We've had some concern with her having a cold and cough this week.  Along with that, she has a low grade temperature that keeps fluctuating between 99* and 100.3*.  If it gets above 100.5* and stays there we'll have to get in touch with the doctors.

The next two weeks will be quiet with only blood tests to be done.  So glad that Madi's body will get a little break and some time to recover and prepare for the next round of chemo.

again

Madi started her second week of four consecutive days of chemotherapy today.  It's amazing how well her little body holds up to everything that is thrown her way.  She was able to spend the whole day at school yesterday-  she was very tired, but still in good spirits by the time she got home.  We even took some time for a quick trip to the library right after I picked the kids up from school.

Today, Madi was accessed, CBC done, AraC push received and then a line left in like last week.  A pretty quick trip overall.  Just before we were able to get out the door and get Madi to school, her CBC results came back.  Her hemoglobin is down to 7.5, so she will be getting a bag of blood tomorrow as well as her chemo.  She still went to school today - she had some painting she couldn't miss out on.

Keep the prayers coming.  We really appreciate everyone helping us through all of this.  Your comments and prayers really help to keep us positive!

a full week

(from Jan 30th to Feb 2)

Our little girl is SO blessed and one of the biggest blessings in her life is all the people surrounding her with love.  Thank you all for all the prayers at the beginning of the week on her behalf!

After we got the number results on Tuesday morning, I got the ball rolling for the rest of the week.  My parents were already planning to come for a visit and it worked out great to have them watch the two littler ones during Madi's long week of chemo treatments.

Wednesday was the big day with an LP, intrathecal chemo (methotrexate), a second chemo push of AraC (Cytarabin), and an hour IV drip of Cytoxan.  A lot of medicine to go into that little body.  She handled everything really well, though.

I'll give you a run down of how the time goes on a day like this.  Typically, we head in to the Pratt Center to get her port accessed.  The nurses at Test and Treatment could do this, but we have had issues with blood return (being able to draw blood for testing) due to  the needles used there.  Plus, she is more comfortable having it done at the Cancer Center.  (A no brainer for a parent, if you ask me.)  Just before we leave, she has to be loaded up with extra stuff and snacks for after the procedure - which is promptly handed to Mom to carry.

We then head over to the Test and Treatment area at Mercy Children's hospital.  We haven't been there in a month, but everyone recognizes us when we walk in and make Madi feel very welcome.  They're a very caring group of people.  It was amazing the difference the nurses saw in her.  Everyone who stopped by the room to say 'hi' commented on how good she looked and how happy she was.  I was glad they finally got to see the 'real', very talkative Madi.

Skip-Bo Jr. helped us pass some of the time, plus it made her happy to beat me.

It takes about an hour from the time we arrive to the time she is taken back to the room for her LP.  During this time, blood is taken for CBC and CMP, urine sample taken and she is hooked up to an IV of fluids.  I get to walk back to the room and stay with her until she is asleep to help keep her calm and relaxed.  It then only takes about 20 minutes for the doctor to complete the LP and get her back to the room.

After the LP and intrathecal Methotrexate, vitals are taken and the AraC is given in the room.  The nurses try to give, or at least get started, on all the extra meds before she wakes up from the anesthesia.  This helps get us out a little quicker and eliminates  her becoming nervous about what might still need to be given.  After she wakes, she gets busy eating anything and everything she can get her hands on since she has to fast before procedures.

Then we just wait and until everything is done and we can leave.  She was gifted a new friend before she left the Cancer Center, so Minnie got to hang out with us all morning.

While Madi was back getting her LP and chemo, there was a box delivered to the room I was waiting in.  To make sure her kidneys weren't overwhelmed and continued to function well, she had to be hooked up to fluids until her appointment the next day.  The backpack holds the pump and fluids so she can stay mobile.  The box was full flushes, heparin block and anti-nausea medicine to be administered through the line left in her port.  How truly intimidating for a non-medically trained person!!  The home nurse was kind enough to give me a crash course and a phone number to call for help before she left us.






That day finished up with a trip to church services that night and Madi and I sleeping on the living room couches to make night time trips to the bathroom a little easier on both of us.

Numbers for the day:
WBC - 7.6
Hgb - 9.5
Plts - 516
ANC - 4330

Thursday, Friday and Saturday were pretty uneventful.  She had an appointment each day to get a chemo push of AraC.  She also started on 6-TG for a total of 14 days which will end on the 12th.  Daddy was able to take her in on Saturday after attending his CrossFit class.  It's always nice for the two of them to connect for a little bit and spend some time alone.  It also allows Madi to see her daddy as a caretaker instead of thinking only Mommy can do all of this.

Next week is pretty much the same with four consecutive days of treatment but no LP.  She has been doing such a good job.  We are hoping for at least a few days at school!