Feb 29

Madelyn had her monthly appointment at Seattle Children’s on Monday.  We were all feeling a little “drippy” and congested so instead of going to my sisters we stayed in a hotel.  We arrived in the city about 1:30pm and went straight to Stone Gardens in Ballard.  The girls climbed with Peter for about two hours.  Each time Madelyn climbed she went just a little bit farther.  By the end of the two hours she was almost to the very top and VERY proud of herself.  Peter was also happy – his girls were climbing and lovin’ it. 

As you all know, we like to make our trips to Seattle fun.  Why?  Well because it’s fun.  Plus we like the girls to have positive experiences in Seattle and not just associate the trip with going to the hospital.  Besides we all like something fun to look forward to in the midst of waiting, waiting, waiting and chemo.  We had such a marvelous weekend together.  You know… I really love hanging out with my family.

After the climbing gym, we checked into the hotel downtown.  It was in walking distance to the Bainbridge ferry and Ivars.  We ate at Ivars watching the ferry coming and going.  Then we headed down to Pier 57 and the carousel – taking two spins.  Long spins for mama… thought I was gonna throw up.

The next morning our appointments started at 8:00am.  Luckily the national shortage of IT Methotrexate did not effect MJ - she was able to have her spinal tap, as scheduled.  She went into the procedure room like a champ, but had a hard time waking up.  She was pretty sad, dizzy and tired, but about an hour later she was doing great again.

All her chemotherapy is increasing these days.  Oral, infusions, spinal tap chemo… It is a combination of her growing and the oncologists pushing the numbers.  They want to make sure she gets all the chemo she can tolerate.  The effects, long term, are reducing the chances of relapse and saying good bye to cancer for good.  The short term effects are increased discomfort for Madelyn.  Her post Children’s week is her “hard” week.  Sophia knows what this means.  It is harder for Sophia to cope with lately though… simply because she is three.  Any Mom’s of three year olds know what this means. 

Today, Wednesday, we are seeing those side effects already.  She woke up with head aches, body pain and jaw pain.  She is really not feeling good, but we are giving her pain medicine and encouraging her to still go to school.  At home she just sits around and focus’ on how she is feeling.  With us, she is in that “comfortable” place so the wining and sadness (from the dexamethasone) know no bounds.  At school she is much more distracted and able to re-focus.  Sometimes it’s just not possible to get to school… but we really try.  The medicine also gives her indigestion and constipation.  This month I started her Priolsec three days early and gave the first dose of Miralax before any symptoms have begun.  I am hoping this helps a little.

After her appointments were finished we ate and then headed to the pool.  Madelyn and Sophia’s swimming teacher was sick but the pool let us “splash” around for an hour.  Madelyn is a fish these days - so confident and carefree in the water.  It is such a joy to watch her self assurance and the resulting pride.

Next Daddy had a doctor’s appointment so the girls and I went to the Zoo and visited the Seattle Troll.  The girls love the Troll and so do I… Last stop was Bizzaro for dinner - one of my favorite restaurants in Seattle.  Madelyn and Sophia just had a blast here.  It is a real feast for the visual senses.  Upside down rik shaws, bikes and tables hanging from the ceiling, tons of chandeliers, funky paintings… We played “I Spy” almost the whole dinner – so many fun things to pick.  I love the way Sophia plays:

Sophia:  “I Spy a silver fork.” 

Me:  “Is it that silver fork right there?”

Sophia:  “You got it Mommy!  Good job!”

SO.  Madelyn’s Make-A-Wish trip is officially in place!  In a couple weeks we will be going to Tucson Arizona to a dude ranch.  Madelyn will be riding horses, taking care of horses and hanging out with cowboys and cowgirls.  I am so happy for the girls – getting to have this very special experience.  I will of course take lots of pictures and update you as soon as we get back.

Here are pictures from our super fun fantastic family weekend in Seattle… that just happened to also include Seattle Children’s Hospital J

Analyzing the route.

Team Climb Baby.

Climbing wasn't the only thing happening at the gym.  Little Tickle Monster too...

That's MJ in the pink.

A very happy Daddy.

Waiting at Children's.  I forgot our activity bag!  No coloring, no books, no games.  Can't believe I did that!  Oncology has crayons and pictures luckily...

Waiting for the "Sleepy Room."

Struggling to wake up.  Dizzy, nose stuffed up, hungry, no happy.

Zoo... what to do first?

Oh ya, ice cream was promised.  That's first...

I got this look a lot this weekend.  

Sophia was NOT happy having her photo taken this weekend, at anytime.  Go away Mommy!  STOP TAKING MY PICTURE!  I remember Madelyn being like this at three years old too...

Sophia kept stealing her sisters ice cream...

Amen.

February 11

Hi everybody!  Madelyn had her monthly visit at Seattle Children's on Monday and all continues to be well.  Her numbers were good:


RBC 39.2    WBC 2.5    Plat 265    ANC 1200


ALT is still in the "ok" range, but will continue to be monitored.


Dr Pollard decided to continue to push the chemo. Madelyn had another increase in her 6-MP chemo and based on the scary shortages of Methotrexate I don't suppose we will be seeing an increase in this drug anytime soon.  Ugh, this is so scary.  We don't know how it will effect us yet; I will keep you all posted.  


If you aren't aware, hospitals nation wide are in short supply of Methotrexate.  A drug that plays a major roll in Madelyn's treatment.  They are in extra short supply of the preservative free type which they use for spinal taps.  Madelyn is due for this procedure (Methotrexate in her central nervous system via spinal tap) on Feb 27th.  


Here's a link to the story on ABC News & NY Times:


http://abcnews.go.com/Health/CancerPreventionAndTreatment/critical-shortage-childrens-leukemia-drug/story?id=15557922#.TzcI4LGPUsI

http://www.nytimes.com/2012/02/11/health/policy/supply-of-methotrexate-a-cancer-drug-may-run-out-soon.html?_r=1&ref=health


She just finished her steroid pulse today and so far it has been ok.  She missed a little school due to pain in her legs and jaw and constipation, but in the emotional and insomnia departments it was better.  


We returned about 10 days ago from a fantastic trip with friends and family.  My parents and two good friends of ours went with us to Hawaii.  We rented a house on the beach.  We all just relaxed, played and had big, long, boisterous meals together.  It was really good for the four of us.  I, in particular, have needed a little re-grouping time.  It was hard to leave, but I am back and working on my personal projects with new vigor.  Here are a few shots from the trip:

Lots of sand castle makin!

MJ with Auntie Shelly.  My good friend in Seattle.

The famous shaved ice!

MJ talking with Uncle David.  My good friend from NYC.

Watching the HUGE, GINORMOUS waves on the North Shore.  So cool.  I've never seen anything like it.  No swimming that day obviously...

The fearless boogie boarder.

Pot was too small with all the mouths eating corn this night.  

Intertube blowing competition.

MJ heading out for her surfing lesson.  Yes, that's right people.  

She rocked the waves.  

She stood up!!

Shrimp shack eating...

Jan 18

This is the first message I read this morning:

My warrior and precious daughter is now my angel. After valiantly fighting this insidious beast for almost 18 months, Leann Elysebeth is now at peace and pain free. She fought to the end and took her last breath at 3:17pm today. Thanks to all of you who have supported us on this journey.

My heart just broke… again.  It breaks a little more with each hurtle Madelyn has to overcome and suffers a huge crack when I hear news like this.  Leann’s Mom Karen was on bed rest with her pregnancy and not at the hospital when her first baby girl left this world.  Leanne had relapsed and was preparing for a bone marrow transplant… then pneumonia. 

Madelyn in contrast continues to do well.  She had a CBC on Tuesday at Island Hospital. Her recent increase in chemo dosages seems to have pushed her ANC down to where her Oncologist want it to be.

Hem 37.6    WBC 2.7    Plat 332    ANC 1385

Her ALT is still running high though – 83.  We will continue to watch this.  The ALT test is measuring liver injury.  All these drugs she has to take are affecting her liver function.  It’s worrisome because she has 14 months of treatment left and we need that liver working to process all these foreign chemicals.

We all went on a small vacation to Leavenworth this weekend.  We went with our good friends and favorite travel buddies The Harrington’s.  Madelyn and Brennan took lessons at the in-town ski-hill, we checked out events at the Ice Sculpture Festival, we went sledding… we played in the snow.  It was FUN!

Our trip back over the pass, including chains, was epic and then the snow continued! At about 6pm near Barring on Hwy 20 Madelyn started screaming and crying that her ear was in pain.  She had mentioned it hurting during her ski lessons, but I had thought it was just the cold.  So a call to the on-call Oncologist confirmed what we were thinking.  ER time.  Most likely it was an ear infection, but in case it was something else we had to take her to the hospital.  So instead of heading home on Monday night we drove straight to Seattle Children’s.  Madelyn was checked in by 8pm and discharged with an ear infection by 11pm. 

Brother, our life.  I am thankful that it was just an ear infection and we were in a place we trust and know so well.  Nothing like a little extra drama to end a five-kid, four-adult weekend in the snow…  That’s right we adults were out numbered and we felt it.  Boy was it fun though.

Those cracks that happen in my heart are re-cemented on weekends like Leavenworth.  Watching Madelyn smiling as she smokes it down the hill and says “weeeeee” at the same time… truly, they are the best medicine for my broken heart.  Watching her so adamant that she was NOT tired and damn mad at me for potentially missing fireworks and dinner out with Amy, makes me unbelievably happy.  (She did not miss either).

The Make-A-Wish Foundation has decided to grant Madelyn a wish.  I will keep you posted on this excitement as it unfolds…

Please remember tonight that there is a family out there devastated by the loss of their 14 year old baby girl to cancer.  Send their angel your love, send their family your strength and give your kids an extra hug… and, heck, throw in a cookie.  Who know what tomorrow will hold…

Jan 3 / long day

My girls are really good at sitting.  I decided to do our Children's run in one day yesterday.  My family was all together over New Years and I was ready to have a quiet night at home on Monday.  So the girls and I left for Seattle at 8:30am and Peter stayed home to work.  The girls just talked and snacked and played and sang the whole ride down.  We pulled over on a freeway on ramp around 9:30am to put MJ's EMLA cream on.


Our lab appointment was at 10:30am and our doctor's visit was scheduled to start at 11:30am.  We got right in for our labs, but ended up sitting in that waiting room from 10:30am until 12:45pm.  I brought snacks plus we raided the infusion rooms snack/drink area.  Other than snacking and a little coloring, we read books the whole time.  I am just amazed by Madelyn and Sophia.  They very happily sat and read books for over 2 hours.  Never complained once or got those "I'm bored wiggles" that most kids, understandably, get.


Madelyn's counts were good, but ANC and ALT are still running high.  


Hem 38.8    Plat 206    WBC 3.1    ANC 1953


So the doctor increased Madelyn's weekly oral Methotrexate dosage. 


The ALT is a liver function count.  It is running high which means her liver toxicity is high (from chemo).  We will get this checked again in two weeks at Island Hospital.


Madelyn was a little lacking in spunk for a few days this week and complaining of a belly ache.  We are thinking that all the extra eating and treats may have caused her to be constipated and the lack of energy may be from too much excitement from all the cousins (and not enough sleep).  I have three sisters and each of us has two kids.  Which is super fun for all the cousins. Our New Years was busy, loud and sleepless.


We were finally ushered into an exam room at 12:45pm.  I used all of my will power to not be irritated.  It isn't their fault.  It's the holidays fault.  The doctor reviewed her counts and did the physical exam.  Madelyn got the ok for her Vincristine infusion.  (This chemo will also increase next month due to her continued growing).  Next we waited for the nurse to come for her infusion, but luckily that didn't take too long.  


The doctor's know us and our routine.  When Tina walked into the room she said "how late are we for swimming lessons?"  Luckily we were not.  I had factored lunch in the schedule and our infusion room snack raid would probably be sufficient to get us through lessons.


Madelyn has no problem going to Children's when she knows a swimming lesson is at the end of the day.  She just LOVES her lessons.  I spoke with her teacher and now Sophia will have her own lesson too!  Yesterday was our first day of this.  Sophia was so excited to start her lessons and be just like big sis.  So at 2pm Madelyn had a lesson and I splashed around with Phia and then at 2:30pm we switched.


Next we had to take a run to the pharmacy so we did not leave the hospital until 4:30pm!  We stopped for a dinner to eat in the car for the girls and then we were off to sit in traffic.  The girls inhaled their dinner and passed out before we reached Everett.

Dec 23 HAPPY REMISSION DAY!!

Today is going to be a good day.

Dec 23rd is the day one year ago when Madelyn was declared in REMISSION.  I don’t think I’ve ever cried that hard from happiness, ever.  It meant that she would be officially labeled Standard Risk and an Early Rapid Responder.  In other words, her path through the treatment maze would be easier because she would need less chemotherapy.  These two labels have made a huge difference in Madelyn’s experience with cancer. 

Chemotherapy is a wonderful thing.  It has been saving the lives of people for about 40 years now. Madelyn has received about 8 different kinds over the last year and currently is on a cocktail of 4. All the other medications she takes are simply to treat the side effects of these chemos.  Oncologists spend more time combating symptoms of the treatment than anything else.

It is time for a new solution and scientists are out there working on it.  They are getting closer to new treatment paths.  The regiment of drugs that pediatric leukemia patients take date back to the 1960s (with perfections to the drug symphony happening every year).  High Risk patients have a very, very long, hard treatment path and that road continues throughout their life due to the long term effects of these toxic drugs.  I look forward to the day when all this changes…

Madelyn is going to spend this momentous day doing nothing momentous.  Her biggest challenge today will be how to sneak one more candy in her mouth when Grandma isn’t looking.  Madelyn and Sophia will be spending the night at Urs and Harriet’s and making ginger bread houses.  Peter and I will have a night to ourselves to rejoice.    We have so much to be thankful for this year. 

One year down.  14 months of treatment to go…

Dec 19

It has been a long time since my last post.  Sorry everyone. I have been struggling.  Madelyn is doing amazing.  But I am struggling.  Thanksgiving Day was the one year anniversary of Madelyn’s diagnosis.  I have been very contemplative the last few weeks.  I have wanted to bundle up my little family and run away to start something new, something fresh.  Essentially I am distracted, tired and sad.  The anniversary is just shaking around my insides a little.

Madelyn has 14 months of treatment left.  I think I am more scared of treatment ending.  Chemo keeps the demon at bay.  We will only know for sure that she has beaten this monster after five years of no recurrence.  Five years of waiting, watching and worrying.

So that is what is going on in my head...  Madelyn, however, has had a fantastic couple of months.  She is simply a 5 year old, being a 5 year old. She has been full of energy, spunk... and well, just growing up.  I am amazed in her transformation in the last four months.  She has had her first dance recital, her first skiing lesson (Peter is especially excited about this one), is starting to sound out words (beginnings of reading), she is swimming across the pool all by herself and continues to be the most extroverted, confident five year old I have ever met.  November was her best post-infusion and steroid month yet.  Insomnia and hunger, yes, always... but energy was still good and hardly any extreme emotions.  

On December 5th she had her “big” day.  Every three months she receives a spinal tap with chemotherapy placed in her central nervous system or “going to the sleepy room.”  This always makes her nervous and anxious.  She also can’t eat before the procedure.

We’ve tried hard to teach Madelyn and Sophia words for describing their feelings.  These are big concepts to understand at 3 and 5.  If they are able to describe their feelings it can help a lot in coping with that feeling - we adults have trouble with this too.  When we walked into the sleepy room Madelyn said a couple of times “I feel very nervous.”  The doctors and nurses immediately surrounded her and told her why she DIDN’T need to be scared.  Which didn’t make sense to me.  It’s a scary room for me!  She was just describing her feeling and didn’t need anyone to fix it.  She just needed us to know.  Which I think is so brave and mature.  Peter and I’s response to “I feel very nervous and I am a little scared” is this:  “That’s ok.  It’s ok to be nervous and scared.  I understand why you are feeling that way.  If you need Mommy or Daddy, the doctors or the nurses to do something for you - to make things easier - you let us know.  I love you, Madelyn.”

Madelyn’s counts were good, but her ANC is still running a little high:

Hem 37.9    Plat 213    WBC 3.1    ANC 1916

The doctor decided to wait four weeks before increasing her chemo dosing again. (It is the “sick season.”)  Looks like we’ll be heading towards another increase in chemo though.  We went to Island Hospital today for our interm CBC and counts are still a little high:

Hem 36.0    Plat 321    WBC 3.2    ANC 1808

She is growing.   A few weeks ago (again overnight I swear) she grew out of all her shoes.  We bought her five new pairs of shoes in one store.  Rain boots, snow boots, runners, “fashion” boots (as MJ likes to call them), croc’s and dress-ups.  She is in the 75th percentile for weight and 50th percentile for height.  I was glad to hear this news as chemotherapy often stunts the normal growth of kids.

All this growing, meant an increase in dosing of her drugs.  We saw the effects of that increase.  She was very emotional, tired, hungry, tummy pains and had insomnia worse than usual.  We also had to give her more pain meds.  She cried every morning, all morning, from Tuesday - Friday and most nights.  Luckily, when she gets to school her teacher says she is well distracted and is doing well... just tired and hungry.

During Madelyn’s steroid week Peter is often sleeping in the girls room.  Madelyn’s insomnia keeps her awake and her waves of emotions make her nervous and anxious.  So she comes into our room most nights and sleeps with us.  Peter eventually gets up and crashes in the girls room.  I always laugh seeing Peter passed out amongst pink sheets, a white, billowing overhead tent and engulfed by princess pillows and pillow pets.

She is still bothered by her short hair, but it doesn’t get her down.  She crawled into bed with us one morning this week and said “Mama, Sophia is awake.  She said she loved me.”  I responded “oh, that is so nice honey.”  “Ya,” she said “even with my short hair!”  Oh, my heart.

When we arrived at school on Tuesday morning during her steroid week, she said the bandage over the site on her back (from the spinal tap) was bothering her and she wanted to take it off.  So I went into school with her and we headed for the bathroom.  Usually she likes to take bandages off slowly by herself.  But I could tell she was tired and worn out.  I asked her if she would like me to count and then take it off very fast.  We’ve never done this before.  Her face was sad but resolute:  “Yes, Mama, ok.  Let’s do that.”  So I lifted a little corner and counted.  As soon as it was removed she started to cry.  But not huge screams and tantrums... just a sad, solemn cry.  She knew it was best solution, but was sad about it and the discomfort.  So strong in these tiny little moments.  It’s because she has to do be brave so frequently that my heart breaks.

The holidays are about being thankful and thoughtful for all the special people in your life.  I have so many people in my life that I am extremely grateful for... Peter, my two fabulous, wonderous girls, my family and all our fantastic, supportive friends.  I have felt the weight and warmth of this love this year.  We could not have made it through without each other and all of you.  

December 23rd Peter and I will be celebrating just the two of us.  This is a date we will never forget.  The day we were told “do you want the good news or just the really good news?”  I burst into tears as we were told Madelyn was in remission! I am especially thankful that this strong, beautiful girl is still HERE with us.  Sitting next to me, hugging me and saying “Mama, I love you” with her dancing eyes.