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.