April 19 / Out of the hospital!!

We are out of the hospital, back at the apartment ... and bald tonight.


Here are the last couple days in pictures:

Madelyn received her last dose of Doxorubicion on Monday April 11.  Side effects started to rear their ugly head only on Friday.  This picture is from Saturday after we figured out she had mucusitis in the GI track.  We began to see significant hair loss this day too.  The pain meds got her off the couch Saturday, but she is still not feeling great.  Here she is making pizza's for dinner.

Team Madelyn off to Children's at 7:45am yesterday morning.  Yes, that is a potty chair.  Go hard or go home.  No more diapers, no more diapers, no more diapers...

Not feeling good from the start of the day.  She dressed, brushed her teeth, brushed her hair and ate breakfast while laying in bed.

Coloring while waiting...

  

Waiting room table game.

A very sad and stressful time getting accessed.  She hates the smell of the cleaning swabs.

And Sophia read a book and watched TV during Madelyn's torment.

Here she is waiting for the doctor. This is unusual for her.  When the doctor examined her a little while later she started screaming when he touched her belly.  She had some morphine shortly after and headed down to xray.  After another very vocal episode of pain followed by morphine, the attending decided to keep her overnight for pain management and observation.

Major hair fall out in the afternoon waiting to go to the SCCA floor.

... and more coloring...

 When she woke up this morning she had very little hair left and hair was everywhere.  I asked her if she wanted to buzz it off.  She said yes.

A cut for the long stuff... cool spikes.... then the buzz.

She wanted to keep the hair.  Here she is collecting it in her bag.

I know she looks sad in this picture, but she is just concentrating.  She has been super absorbed in her coloring.  This hospital visit she only requested TV once and only for 30 minutes.  She colored or we worked on her letters and reading.  

Auntie Jen came today to take us back to the apartment as Peter and Phia are in Anacortes tonight.  She brought with her Princess tattoos for decorating her new look.  We put four all over her head.  She loved it, but shortly after became sick and threw up.

Getting her ready for bed tonight I said "come on Madelyn, let's go brush your teeth and brush your hair" wondering if she'd get the joke.  She thought it was pretty funny.  "Mama you're crazy."


I thought the no hair thing would bother me a lot more than it has... so far.  Let's see how I feel in a couple days.  Of course it's not the hair that's the issue, but the reason why it's gone.  For now though, Madelyn and I are both enjoying her new look.  She looks beautiful.  I love kissing that bald head.  It reminds me how thankful I am that I have that head to kiss.

April 18

Long, hard day for MJ.  We arrived at Children's at 7:45am for labs and then a doctor's visit. Madelyn and I are still here.  


She has been incredibly tired since Thursday evening.  Friday she was despondent.  Saturday I deduced she had mucusitis.  Sunday she lacked energy and needed pain meds all day, BUT we were able to get to the park.  It made us so happy to see her smiling and genuinely enjoying herself.  It also made us sad because she was so obviously a sick child.  She needed serious help to get up stairs and to walk form one place to the next.


I was worried when we went in this morning that she might need a transfusion.  Her platelets we low, but not terribly low.  


Hem 40.1    Plat  182    WBC 2.3    ANC 722


Her ANC has to be above 750 to start the second phase of Delayed Intensification.  Scheduled for April 25.  I'm not sure we'll start on time.  Her counts will still be dropping this week so she might not recover in time to begin on schedule.


She had incredible belly and throat pain during her doctors visit.  She was screaming at the top of her lungs and crying uncontrollably.  It was awful.  They gave her some morphine, ordered a belly xray and gave her some fluids via IV.  Even though she's had regular BMs lately (I am Little-Miss-Anal-Kathy recording eeeeeeverything), her system is backed up.  She has started Miralax to get things "in-gear".  The mucusitis is in full swing and more morphine was needed by about 2pm.  Literally she was just full-tilt screaming in pain.  It was sooooo hard for her and us.  The doctor decided we should be inpatient tonight to get the pain under control. 


The morphine did it's job and she finally had a meal - a big meal - at dinner.  And then she threw it up.  So she had another meal.  


She also lost about 75 percent of her hair TODAY.  Big bald patches.  She wants to collect it. We have this big wad of it - probably the size of a shoe - in a ziploc.  I keep talking about all the cool things we can do with a bald head - tattoos, head painting, our cool wigs and hats.  She seems ok, but she hasn't seen herself yet either.


She hasn't wanted to watch TV this visit.  That tells you how truly awful she feels.  She only wanted to read one book.  All she wants to do is color her pictures.  In a little notepad today she had a whole page full of suns with smiley faces.  Another page full of houses.  Another full of stars.  And I mean packed in there.  Not a blank space to be had on the page.  I find this very interesting.  I don't know how to decipher it, but it is obviously telling of what is going on inside her head.


This morning she asked me when her treatments were going to be done with a long, sad face and a couple of tears.  She said she was tired of going to the hospital and taking medicines.  "When am I going to get better Mommy?"  I wish I could tell her "soon baby soon."

Firecracker

Do you ever feel like a plastic bag
Drifting through the wind
Wanting to start again

Do you ever feel, feel so paper thin
Like a house of cards
One blow from caving in

Do you ever feel already buried deep
Six feet under scream
But no one seems to hear a thing

Do you know that there's still a chance for you
Cause there's a spark in you

You just gotta ignite the light
And let it shine
Just own the night
Like the Fourth of July

Cause baby you're a firework
Come on show 'em what you're worth
Make 'em go "Oh, oh, oh!"
As you shoot across the sky-y-y

Baby you're a firework
Come on let your colors burst
Make 'em go "Oh, oh, oh!"
You're gunna leave 'em fallin' down-own-own

You don't have to feel like a waste of space
You're original, cannot be replaced
If you only knew what the future holds
After a hurricane comes a rainbow

Maybe you're reason why all the doors are closed
So you could open one that leads you to the perfect road

Like a lightning bolt, your heart will blow
And when it's time, you'll know

You just gotta ignite the light
And let it shine
Just own the night
Like the Fourth of July

Cause baby you're a firework
Come on show 'em what you're worth
Make 'em go "Oh, oh, oh!"
As you shoot across the sky-y-y

Baby you're a firework
Come on let your colors burst
Make 'em go "Oh, oh, oh!"
You're gonna leave 'em all in awe-awe-awe"


Boom, boom, boom
Even brighter than the moon, moon, moon
It's always been inside of you, you, you
And now it's time to let it through

Cause baby you're a firework
Come on show 'em what your worth
Make 'em go "Oh, oh, oh!"
As you shoot across the sky-y-y

Baby you're a firework
Come on slet your colors burst
Make 'em go "Oh, oh, oh!"
You're gonna leave 'em all in awe-awe-awe

Boom, boom, boom
Even brighter than the moon, moon, moon
Boom, boom, boom
Even brighter than the moon, moon, moon
***********
When you want to think of Madelyn... listen to this song.  "Firecracker" by Katy Perry.  This is mine and Peter's song for MJ ...

April 16

It was a long night, but Madelyn did just fine with no more Benadryl.  She was awake a lot though due to belly and throat pain.  She also had a long and very painful BM.  I finally put it all together this morning when I decided to try giving her pain medicine and she felt better.  I called the the on-call Oncology doctor confirmed it.  She (most likely) has mucositis of the GI track.  A common side effect of chemotherapy, especially the Doxorubicion.  Mucositis is tiny ulcers (soars) along her digestive track and are painful.  It is one of those side effects you can only wait to resolve itself and if she has a low ANC (which she probably does right now) it will take longer.  This is probably why all she has been wanting to eat is cold corn and hasn't been drinking well.


The medicine has been working for the pain today, but she is obviously drugged.  I much prefer this though to the total disconnection she had from us yesterday.  It was scary.  Today MJ has slow, slurred speech... but a lot of speech.  She can't stop talking.  Talking about lots of happy things in a slow, monotone manner.   It is hilarious.


We went to my sisters this morning.  She sat with Aunt Jen and "had a good chat" (direct quote from MJ).  Jen made lunch for us and she sat at the kitchen table and talked with her - continuously.  (I played with Sophia, Soren and Wyatt - my nephews - love those two funny boys). Madelyn wanted to come back to the apartment to take a nap and was laying her head down on the kitchen table. But she didn't want to leave until 12:30pm so she could show Auntie how she swallowed pills.  Madelyn explained to her, in great detail, exactly how its done.  It was probably a two paragraph description.


She is also having a lot of trouble walking now.  The Peripheral Neuropathy plus dizziness from drugs are requiring her to have a hand to hold whenever she walks.  She can't go up or down stairs without assistance.


Luckily all three of us were able to take a nap this afternoon.  I had approximately four hours sleep between midnight and 7am last night so I was bushed by the afternoon.  Peter went home last night and will be in Anacortes until Sunday morning.  We have a doctor's visit on Monday morning and then he will be back in Anacortes that evening.  Luckily Madelyn has a rest week coming up.  No chemotherapy to get her counts recovered and her body recovered before the really big two weeks starting April 25.

April 15

Madelyn has been pretty lethargic and despondent all day.  She took a morning and afternoon nap and went to bed at 5:30pm.  She was sprawled out on the couch when she was up and it was hard to get her to talk about much.  It was disturbing and a big turn around from the previous days of moodiness.  I called Hem/Onc (Hematology/Oncology) and they decided to stop the Benadryl (continuing with the other two anti-histamines).  Now I am sitting here frightened that she will have respiratory issues.  I have been checking on her every 20 minutes since 5:30pm (when she went to bed).  It is going to be a long night.  


And then poor Peter accidently had a bunch of peanut butter today.  He was miserable and was in a Benadryl stouper.  A highlight of the day though was a visit from our friends the Hernandez'.  I immediately took over their new baby girl (5 weeks old) and had warm, snuggly time with a passed out baby.  While Peter and Madelyn were napping I spent a long time with Sophia at the little parks here at the apartment complex.  I swear she must have swung for 45 minutes!  Although she told me I'm not as good at the under-dog as Daddy.


I took sometime with Sophia on Wednesday - just the two of us.  We had girl chat over chocolate milk and espresso at Starbucks, watched water fountains, picked out a craft to do with sister and had some playground time.  She also had her first full hair cut:

Since Monday, Madelyn hasn't wanted to do much but lie on the couch.  Here she is working on the project Sophia picked out.

Got her to the table to work on her letters on Wednesday... AND she was joking around!  So nice to see a smile rather than the eyebrows scrunched together.

Still drawing a ton except for today.  We couldn't get her interested in anything today.  Here are the little books she has been working on.  She put together a bag of materials that she keeps next to her bed: little pieces of paper she cut out, the scissors, tape and a pen.

Physical Therapy on Thursday at the hospital's Therapy pool.

Love this... the physical therapists at Children's are so inventive.  Here she is pretending to be a squirrel, squatting and then standing up and looking over the top of floor.  She is looking for bunnies.

Daddy wearing Phia's goggles :)

April 14

Madelyn is in the throws of Dexamethazone and overall very, very moody.  It is super fantastic fun.  We had a melt down today over needing a cashew butter and jelly sandwich right as we were leaving for Physical Therapy (no peanut butter in our household because Peter is allergic).  She had her winy voice on full throttle most of the day.  Her little belly and cheeks are doing the steroid pooch.  Three more days of steroids and counting.  Monday can't come fast enough.


She was off the Zofran (anti-nausea) today; so she weathered the Doxorubicion well.
Walking is still weak, but she had a physical therapy appointment at the swimming pool today and that was a big hit.  I will have pictures of that soon. Grandma Terry and Grandpa Jim came to visit in the afternoon and that was fun for all of us.  Peter and I took a late lunch just the too of us... and lingered.  Madelyn had a bright, happy moment before they left where she described to Grandma the drawings she has been working on.  


Phia was hilarious.  All day.  That girl!


I'm making this report brief tonight.  I have been working the last few nights after the girls go to bed and am tired.  But I have lots to talk about though and will try to email more soon.

April 12

Madelyn had a so-so day, but vomit free and she ate well.  The Dexamethazone (steroids) are making her quite moody and the Vincristine is making her legs weaker.  She fell down the stairs today because of lack of strength and it was scary feeling for her.  She woke up at her 10:30pm and 4:30am for her medications just fine.  She got out of bed at 6:30am, but went back to bed from 8:30am - 10:30am.  She took another nap from 2:00pm - 3:30pm.  She went to bed at 6:00pm. She is beginning to ferociously draw again.  Waking up this morning and beginning to draw straight away.  She drew little books all day long.

The steroids are making the hunger extreme again... not quite like Induction, but still significant.  With Madelyn, amusingly enough, it is all about vegetables. Artichokes, corn, asparagus, peas, green beans, salads... we send her to bed with a big bowl of corn.  She ate an entire artichoke all most completely by herself.  It's great - I know!  But so UN-5 year old like.  She has a Dora and Diego cook book. Only MJ would pick this to make:

MJ's salad

Phia's salad

April 11

Madelyn’s counts were low today.  Way low.  As expected because of the intense chemo she is receiving now, but still not fun to hear.

Hem  42.3    Plat  216    WBC 1.4    ANC 426

With numbers like this she won’t even be going to the grocery store with us - event for a quick trip.  We will be in and around the apartment.  Period. 

She had her last dose of the Red Devil today.  She is not feeling great, but not vomiting.  The Zofran (anti-nausea) and oxycodone (pain from Vincristine) are sufficiently doing their job.  I have to give her the allergy meds every six hours even over night.  I have organized the anti-nausea meds to be given at the same time; so she will not get behind on dosing.   She is having trouble with strength in her legs, but not a lot of pain at the moment.

She is more anxious and scared since the hospital stay a week and half ago.  She was upset and crying during the accessing of her port today.  And when that happens it ramps up her allergies.  Every time she is upset, physically active, takes a bath, eats - her allergies flare up.  The doc’s are saying to expect another week or so of this.  So the complicated pill schedule continues.

Next week her body will have a “rest week” with the hope that her counts will recover before her most intense two weeks.  The weeks of 4/25 and 5/2 will be BRUTAL.  We got the schedule for the first week today.  I am anxious.  I am worried.  Check it:

Monday: labs, doctors visit and spinal tap with chemo in her central nervous system

Tuesday: ALL DAY infusion starting at 8am

Wednesday: infusion most of morning

Thursday: infusion most of morning

Friday: infusion most of morning

The infusions will all be brand new chemo meds for her.  They will most likely keep her accessed this whole week.  In other words, they will not take out the needle every day.  They will send her home with the needle and tubes in so that she doesn’t have to get poked every day.  I’m not sure how this will go over with Madelyn.  She does not like being accessed.  She walks hunched over with her hands protecting it, she constantly looks at the IV pole with her eye brows scrunched together, she is scarred. 

So more to come on all that.

The last several days have been good besides the allergy flares and some occasional times of not feeling good.  Her best friend Alaina came down with my good buddy, her mom, Amber on Sunday.  They also brought Sophia with them.  I was overjoyed to see my baby girl.  A whole week I had been apart from her!  When she came in she walked over to Madelyn, gave her a hug and said “I missed you Madelyn.”  I thought my heart would break.

So wonderful to have visitors...  we were both missing home and family and they represent both to us.  We just hung out at the apartment as Madelyn wasn’t feeling terribly well, but it was GOOD.

The very best part of the day was when our family was finally back together again!  About 5:30pm Peter arrived!  We were all apart a whole week.  I know I’ve said it before, but truly, home is not four walls and a roof.  It is where love is.  Wherever Madelyn, Sophia and Peter are is home for me. 

Boy, talk about marriage stressors eh?  Doesn’t the saying go: if you can make it through traveling together, remodeling a home and having kids your marriage can withstand anything?  Well, add cancer to that!  I have never been more in love with Peter than right now.  We can still find things to laugh about, photography projects to talk about, discuss places we both want to travel too, remodeling hopes for our home, etc - all in the midst of figuring out the logistics of life with cancer and worry over our baby girl.

MJ wanted me to take this picture for you all.  She really loves these bears.  The one on the right is from an old high school friend of mine, Danielle Hansen-Becker.

 

... and she wanted you all to see this one too...

Look at the hair that was growing back in from when she lost a bunch in December/January.  She is starting to loose hair again now...

So MJ and I had major craft week - or "Projects" as she likes to call them.  I think that word came from Ashley :)  Check out the crowns we made and the wood painting set was a huge hit (good job Daddy).

Very serious business.

My little Barefoot Contessa.  Madelyn loves to cook...

We have started potty training again.  This was post accident... leg warmers and sassy hat.  Awesome.

April 6

Madelyn was in good spirits all day and her energy was good.  She didn't even take a nap.  I am suspecting all the anti-histamines are making her a bit hyper.  She isn't necessarily hyper physically, but definitely mentally.  The Vincristine is making walking a little hard and she avoided all stairs today, but overall she was walking and moving well... 

Her brain was super active.  She was talking to me indepth and at great length on topics.  We worked a lot on letters and wrote a letter to her friend Alaina.  She joked around ( a lot), made treasure maps and a very cool, very detailed picture.  She cut a lot of paper.  She made an "exit" sign for the door, she picked out a pair of must have pink flower hair brarrets for her hair and Sleeping Beauty the movie.  She reminded me to get gas and to put my mask back on when I forgot. She helped me cook dinner and we had a girls movie night.  She smiled and laughed, sat on the edge of her seat and was gleeful watching her new princess movie.  

She still showed signs of her allergies to the PEG.  Not as much as yesterday, but a little - mainly this evening. She was a little shakey too.  I still feel concerned about the allergy.  So many times today I would just watch her and wish, like I have never wished for anything, that I could take this all away.  SHE IS ONLY FIVE GOD DAMN IT!!  She has to go through all this crap to get better.  It is so wrong.  I went in to check on her tonight and my first sight was a little bald patch on the top of her head.  It is of course just hair and it grows back, but that is not the point.  I watched every piece of that hair grow on her sweet little head and cancer is taking them away from her.  

You suck cancer.  You are unfair, rude, atrocious, corrupt, loathsome, a barbarian. You are lame.  I stick my tongue out at you cancer.

There.  I feel better.

Ok, as I mentioned yesterday, I went to a Leukemia and Lymphoma Society Team in Training practice on Saturday.  This group of people in Seattle are running in a marathon in Paris to raise money for Leukemia research.  We were all planning to go, but of course two days before Madelyn ended up inpatient at the hospital.  So just my Mom and I went and I made a speech for the runners.  (I had trouble getting through it without crying, but I did it).  As many of you know, Madelyn likes everything explained.  She doesn't like to be confused.  So my thought was to begin the speech explaining to her why we were there.  Well, I decided to not change it and passed out pictures of Madelyn as I spoke:

Madelyn,

These people here are running in a race – a long, long race – in order to raise money.  The money they raise by running will go to cancer research.  This is what that means: people study sickness like cancer and figure out ways to fix people.  These people are running to help make cancer medicines for you and other people with cancer.  BUT! running such a long, long, long, long way is hard.  What they need is inspiration to keep them going.  Inspiration can be many things - like pretty pictures, favorite songs or ice cream cones.  We’ve come here this morning to be like an ice cream cone.  You have cancer.  They are raising money for cancer.  Your smile is like an ice cream cone for them.  But don’t worry, I won’t let them lick you.

Now to all of you…

I’d like to tell you about my little noodle here.  She is a firecracker.  No, she is a pink firecracker.  I urge you to listen to the song Firecracker by Katy Perry while running; this is Madelyn’s song.  Madelyn is fun, she is spunky, she is out spoken, she is an awesome dancer, she is creative, she is tenacious, she loves princesses and horses, she is NOT afraid, she loves asparagus, she has a little sister named Sophia who thinks she is the bees-knees… and she is my little, baby girl.  Just two weeks ago she turned five years old. 

I REFUSE her being a martyr.  She is, and will only be, a soldier.  I will walk her down the isle at her wedding, I will see her graduate from college and I will be there, just like my mom was, when she has her babies.  THAT is the plan.  Cancer will not win this time.

But the real reason for that is because of people like you making it a priority.  Pediatric cancer was not a lifestyle that we ever expected to be a part of.  Our silver lining is that research and care for her specific type of Leukemia has a long, well documented, history.  Cancer research is the reason why that path to her cure is there.

Cancer has reorganized our priorities, it has taught us about unknown strength, and it has made us love even more deeply.  Remember those three things while you run: priorities, strength and love.  There are types of Leukemia and Lymphoma that do not have the research or the treatment history.  There are people and children out there loosing their battle.  They need our priority, our strength and our love.

Good luck to you in Paris.

April 5

Overall a so-so day for MJ.  She was not feeling good, but luckily she ate well and we did not have any vomiting.  She was showing signs of allergies all day.  She had only one hour this evening when she seemed free and clear from her allergy hives.  They were back by the time she went to bed. 


We did go to the bookstore today and she picked out a new Tinkerbell book.  We went to a Physical Therapy, but activity to increase her heart rate was kept to a minimum.  It revs up her system and makes her allergies more pronounced.  She mainly did stretching and reaching exercises today.


She had a nice nap after lunch, book reading on the couch and we visited with Lucas and Beckett. They are in Seattle with my parents this evening staying at a hotel close to our apartment.  The four of them are going to the Star Wars exhibit tomorrow.  Madelyn was super excited to see them, but shortly after dinner she was ready to head back to the apartment to rest.


I have started feeling a little scratchy throat and drippy nose this evening.  Tomorrow will be a mask-all-day day.