Treatment Day

This morning was a bit busy trying to get all my little ducks in a row.  I'm so grateful for all our friends who are able to help us on treatment days.  Getting the kids on the bus, the little two to a sitter for the 4 hr appointment and then getting back home can sometimes be a logistics nightmare.  Especially when the traffic looks like this.

Today there was an extra stop to make since Madi prefers to be accessed at the Pratt Center office instead of Test and Treatment at the hospital.  Not a problem - we want her to be as comfortable in any situation as we can make her.  I just have to remember to allow an extra 45 minutes to our commute even though the buildings are right next to each other.

The staff in Test and Treatment are amazing with the kids.  They try to have the same nurse take care of Madi each time we go in to make it easier on her.  The Child Life Specialist comes by as soon as we get in the room to see what craft, activity, toy or movie Madi wants.  Today she decided to do a craft.

 After getting checked in, hooked up to fluids for an hour, and getting a good dose of Zofran, the doctors take Madi back for her 15 minute procedure.  I have just enough time to grab a coffee before they bring her back to the room.

We head home after she has time to wake up and have a quick snack since she has to fast on these mornings.  She's just a bit tired the rest of the day, but she'll typically stay up playing or watching a little television until bedtime.  It's absolutely amazing how all the little ones adjust so well to the new normal of their lives.

Please keep mentioning her in your prayers.  She does such a good job that sometimes even we forget that she really isn't at 100% and won't be for several months yet.

a request

Tomorrow marks the end of Madi's first 12 weeks on maintenance.  Can you believe it?!  Things have been going really well as far as numbers and how she feels physically.  She's been so blessed to have such an 'easy' time during all the treatments.  We thank God daily for His continued care of her and the rest of our family.

So, my request? We are asking for prayers specifically for Wednesday.  This is when she gets to start her 12 week cycle all over again:  blood work, lumbar puncture, intrathecal chemo, vincristine push and an IVIG therapy drip.  It's a lot for her little body to go through.  She's handled these all well in the past, but we still ask for prayers on her behalf.

I'll have my computer with me that day and hope to update everyone in between games of War and Go Fish.

Thanks!

just a little longer

Madi started the final leg of her current phase on Wednesday 27th.  I'm constantly amazed at how well she handles things and how smoothly everything can go.  We arrived at the Pratt Center to get her accessed at about 9:30am and to have a CBC run.  (The next several treatments are count dependent.  That means her hemoglobin and platelets have to be at a level that is acceptable.)   Our next stop was Mercy's Children's Hospital for another LP.

I'll just stop here and say how crazy this past week was!  Trying to get everything timed just right so we wouldn't miss appointments and school activities was a bit stressful, but we managed.  Since Caroline had an oral presentation at this day, I decided to take Liv and Sawyer with me to Madi's appointment.  They had their squirrel-y moments, but for a 4 and almost 3 yr old, they did REALLY well.  Between the playroom and snacks during a show, things worked out.

The staff at the hospital was ahead of schedule and Madi went back a little before her scheduled time.  It only takes about 15 minutes for them to do what they need to in the procedure room and then bring her back to me.  Just about every time she has an LP, she receives intrathecal chemo - chemo in the spinal area.  We then had to hang around to receive her other two doses of chemo that were scheduled for that day: Vincrystine and Methotrexate.

She's always hungry after waking up since she has to fast before going under.  I try to have a good variety of food for her to choose from, but Cheez-its are her favorite.  

Amazingly enough, we were able to get out of the hospital with time to spare!  I had warned Caroline that there was a hugh potential I wouldn't make it to school in time to see her.  I wish I could share the mental picture of her face when she saw us walk in the door for you all to see.  No matter how understanding she would have been of me missing her Famous American report, it was nice that I didn't have to disappoint her.  The kids and I got to be there and hear her 15 second spiel about Helen Keller. Madi then stayed the rest of the day at school.  Amazing!

The doctors have already warned us to not be surprised if we have some delays the next couple of months.  She is scheduled to have treatments every 10 days.  Each treatment will be count dependent.  Methotrexate dose will increase each time by 50 mg, if her body can handle it.  Just as it has been in the past, she will receive blood or platelets as needed.  We are obviously praying she handles this as well or better than she's handled everything up to this point.  Please keep praying with us!

Kevin has been keeping up with his workouts and running.  I believe he is ready for the upcoming 5Ks he will be participating in.  A huge 'thank you' to all of you who have donated already.  He is still collecting money for the Leukemia & Lymphoma Society.  There's still a link at the top of this blog.  Any amount is appreciated - don't feel like you have to donate a large amount for it to make a difference.  Every little bit helps!  Can you just imagine if everyone just donated $1!  (There are boxes that can be checked or unchecked to hide or reveal donor name and amount, if you want.)  Kevin can also turn in personal checks or cash.

Madi has her next treatment this Saturday.  I'll let you know how things are going afterward.

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!

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.

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.

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.  :)

first blood draw

(Sept 11)
As many of you know, Madi is now home. She was so excited to be leaving the hospital!

She is happy to be home, but tires easily. Right now our big issue is getting her to take her meds without fighting the issue, but it has gotten better.

Today we go in for some blood tests to make sure numbers are where they need to be. I'm hoping to get a better idea of our schedule in the coming weeks, t

oo. Keep praying. I don't see anything being a problem today other than when the nurses come in with the needles. We have some cream to put on her skin to numb the area, but that won't make much difference psychologically to a 5 yr old.

ups and downs

(Sept 6)
Good morning! Our night was long - or short depending on how you look at it. :) Madi is starting to feel sore and bruised from the procedures yesterday so that adds a new angle to things. An ice pack on her hip seems to be helping, though. Bright side - Her kidneys are functioning well! :) She has been fighting a fever since yesterday afternoon. This is normal/expected and they are treating

her with an antibiotic for infection and giving her tylenol. The plan today is to have a port put in around 11:30 am by one of the hospital surgeons. After that is in, they will remove her arm IV (hopefully while she is still asleep). We should hear sometime today the results of the lumbar puncture and bone marrow. Those results will determine our course of action in treating Madi. Please pray specifically for the doctors treating her, her fever to go away and that some of her comfort can be eased if not removed. Thanks for all the prayers so far and all the support and love being poured on us. We are confident and faithful that the outcome of all of this will be good, it's just the bumps in the road that will make it more difficult as we go along. We have a powerful God on our side taking care of Madi!!

first procedure

(Sept 5)
Madi did great with the bone marrow and lumbar puncture! Has had no discomfort at all. She is out exploring (trying to find the fish tank) after beating me in a game of 'go fish'. She will have the port put in tomorrow mid-morning and then have the IV removed. Thank you all so much for the love and support. We are trying to keep the conversations as positive as possible for the kids' sakes as well as our own. :) Keep the prayers going!