July 19

On Wednesday July 18th we left Charles de Galle airport in Paris, France at 11am and headed home from a month in Europe.  We arrived in Seattle at 1pm on the same day and went to my sisters house.  I promptly fell asleep on her couch.


The girls both woke up at 1:30am.  Ahhhh, jet lag.


Seven hours later when our appointments started at 9am at Seattle Children's we were all startin' to drag.  


Madelyn's counts were low.  Still within the range that they want (ANC 500-1,500), but low for her.


Hem 34.8    WBC 1.8   Plat 216   ANC 747


Her liver toxicity was also quite elevated ALT 285, but within normal range for a little noodle with Leukemia.


We will anxiously await her counts at Island Hospital in two weeks and be a little more diligent about sickness.


So now we begin MJs Hard Week doubled with the difficulty of jet lag.  It shall be interesting...

Trip To Europe update

Make sure and check out MJ and Phia's travels in Europe.  So proud of my good little travelers...


http://milk-to-go.blogspot.com

July 17

Phew... all is well.  She had about two days of not feeling well, but rebounded quickly and no fevers!  Yay!  We are at Chales de Galle in Paris this evening and heading home tomorrow.  MJ has her Seattle Children's appointments on July 19 and then we'll finally be home.  Next week will be... challenging... jet lag + Madelyn's Hard Week.


More soon...


Lisa

July 12

Woke up to a bit of a worry.  Madelyn came into our room on our little boat in the canals of Burgundy and started to throw up.  She threw up twice and then went to sleep until about 9:30am.  She slowly started her day, but was not MJ again until 1pm.  We kept the day easy though with no excursions.  We quietly motored to our final destination Montbard, France.  


Peter and I are not quite sure what is going on, but have concluded she may be overdoing it a bit plus the chemo.  


Let's hope that is the case.  We have the pediatric oncology addresses in Dijon and Paris programmed into our phones just in case... will keep ya all posted...

July 3 / Zurich Kinderspital

We are with the Swiss Kuhnlein’s this week!  Always so much fun for MJ and Phia.   On Friday, Madelyn and I went to the Zürich Kinderspital for a CBC and examination with a Oncologist:

WBC 2.4    Plat 251    ANC 1,360   ALT 126

They are so wonderful at the Kinderspital;  we feel very comfortable there.

She had a few days of not feeling well when we first arrived in Europe, but I believe it was just a combination of the previous weeks chemo in combination with jet lag.  Her energy is good now and we are all enjoying ourselves in Switzerland.  She loves her cousins here.  We will leave for France the day after tomorrow and have a family vacation in Burgundy and the Loire Valley.

Waiting to be called back for accessing.

Who is this girl??  She looks so grown up in this photo!!!  Oh my goodness...

While waiting for Madelyn's counts to come back from the lab we went to the cafeteria for lunch.  Peter was in pie heaven.  They had a pie buffet with 12 different pies.  We would never see this at the cafeteria at home.

June 21

We were at Seattle Children's for MJs monthly appointments on Friday late afternoon.  A different day/time because we are leaving on a vacation!!  Yay!!  And we wanted Madelyn to be feeling better by the time we left.


This round of Dex has been pretty good emotion wise... not too bad.  She did say to me last night "Mama, I'm just so sad and I don't know why."  Poor honey, now I'm so sad and I definitely know why...


She has been extremely tired taking 2-3 naps a day and she just looks tired.  Dark circles under her eyes and obvious lack of energy.  Her body is working extra hard this week.


Her counts were good.  ANC was higher than they want so another chemo increase.  Small one this time.  As of Tuesday she came down with a mild cold.  The elevation in her ANC probably has to do with that too.


Hem 36.2    WBC 3.7    Plat 276    ANC 2,394    ALT 126


The poor girl is up to 35 pills a day.  (This is temporary though.  She'll be down to her usual 10-20 per day soon).  A child at school had chicken pox and as you all know this is a big deal for MJ.  A known exposure to chicken pox usually means infusion of antibiotics at Seattle Children's.  If we were in frontline treatment it would mean a possible inpatient stay.  But luckily for MJ her doctor determined she could just do oral anti-virals.  They tested her for immunity when she was first diagnosed (I didn't know this).  Her titer level (measure of immunity) for chicken pox was 2.68 (Anything above 1.0 is considered immune). This measurement plus the fact that she is so far into Long Term Maintenance meant no Children's run for us.  She is being treated as though she has chicken pox though.  Her suppressed immune system means she could still get it.  And chicken pox would mean a week inpatient stay at least.  Her body is being slammed to make sure it is not there.  She has to take three big purple (yay, for purple) pills 4 times a day for three weeks.  Yes, you read that right 12 pills a day - 600 mg of extra drugs being pumped into her little body.  


We are so happy about our Team Madelyn in situations like this.  Madelyn's teacher, Tina, called us as soon as she knew.  We immediately had a discussion with MJs doctors.  Drugs were called in, picked up locally and she started her anti-viral just a few hours after Tina knew of the exposure.  Phew.


Her ANC is probably even higher now as she just finished her last dose of Dex yesterday.  This is good!! for moving into a big 'ol jet plane for 9 hours - we are off towards adventure!  In the past we used to say all we needed was our passports and some money; if we forget to pack something we can get it along the way.  Now we say, all we need is our passports, our money and Madelyn's meds.  Madelyn's meds = half my carry on bag!  


So that leads me to my new, fun thing... I have decided because I enjoy writing for this blog and I have had a "back burner" project going on for way too long... to start a new blog.  I hope you will join me there too and pass it along to all your friends:


http://milk-to-go.blogspot.com/


Enjoy :)

June 4

Madelyn is feeling well.  She had a great Dex week this month!  We were at Island Hospital yesterday for port accessing, blood draw and port flush.  Her counts are right where the doc's want them... her liver function is elevated again though...


ANC 1,210    WBC 2.3    Hem 34.6    Plat 319


ALT 127


Perfect for vacation happening in a few weeks.  Let's hope she stays there!

May 22

The Kuhnlein family has had a busy last few days!  Busy with happy, beautiful, sparkly, tiara, tutu-liciousness, cutiness.  

Peter, Madelyn, Sophia and I all setup for our annual Fidalgo Dance Works photo shoot on Friday evening.  The girls twirled ribbons, danced with wands and strutted their stuff in front of mirrored dancing halls while Peter and I setup backgrounds, taped down paper and setup strobes.  Saturday morning we dressed Sophia in her dance outfit and arrived at Fidalgo Dance Works at 8:45am.  Grandma Terry met us there.  Then tutu-chaos ensued.  Same scenario Sunday morning for Madelyn's dance photos and Grandma Harriet and Grandpa Urs were there to help and then usher the girls off to their house.  Peter and I photographed almost 300 cuties Saturday and Sunday for our local dance school.  We always enjoy spending time with these great teachers and adorable children.  

Sunday evening I excused myself a little early from the photo shoot and left Peter with the mothers, dancers and sequence.  I packed up the girls, got some food and hit the road for Seattle.  We arrived at my friend Shelly's house - aka Auntie Shelly - at about 8pm.  Sophia was conked out but Madelyn was ready to rock it.  (She had slept from 1:30pm - 5pm that afternoon on account of spending all day Saturday at the beach with her older cousins Lucas and Beckett.  She was Exhausted.  Please note the capital E).  Madelyn watched a special movie about the Loch Ness monster fable and Shelly and I hooted and hollered over some beautiful red wine.  (Yes, hooting and hollering is a good description for Lisa + wine).

It was an interesting night of "sleeping" with both girls and me in one bed.  3 am found me sleeping perpendicularly across the bottom of the bed as both girls lavishly slept spread eagle at the head of the bed.  We all awoke at 6am thanks to the dreadful, hateful, mean machine the alarm clock.  So (sigh) up and brush and deodorize and rush for a long day of waiting.

We waited through rush hour to arrive at Seattle Children's just on time. We waited for Madelyn's port to be accessed.  We waited for our doctor's appointment.  STARBUCKS.  We waited for Madelyn to be called for her spinal tap (no food in the morning is always extra fun).  Then Sophia needed to be RUSHED to the toilet.  We waited for Madelyn to come into recovery.  We waited for Madelyn to stop being dazed and confused - poor thing.  She was very discombobulated and cried for 40 minutes.  Then she had a bolis of fluids to help with headaches.  Yup, more waiting watching the fluid drip... drip... drip... Then we went to lunch. Including another RUSH to the toilet.  We waited at the pharmacy for medications not ready and prescriptions missed.  Then off to something finally fun for the girls!  Swimming.  The girls teacher was starting to get a little sick so we skipped lessons and just splashed around for an hour.  Last stop?  Another pharmacy run to get at least one last prescription they forgot.  The last two I will have to arrange to get filled here in Anacortes.

Due to the long weekend photo shoot at Fidalgo Dance Works Peter had to stay behind to finish the shoot and dismantle our backgrounds and gear at the dance studio.  My friend Shelly took a day off work to help me at the hospital - approximately 7:45am - 3:00pm.  It's always a long one.  I thought maybe Shelly would go to work after the appointments, but I could tell she was exhausted.  She told me today that she went home and drank wine and cried all night.  Which somehow made me feel a little better.  Maybe I'm not crazy after all!  Sometimes I feel like people listen to me or read what I have to say and think I am dramatizing.  After all, Madelyn is doing well right?  Look at her.  She is laughing and exuding heath... at least three weeks out of the month.  

It's one thing to read about sick kids or see videos about what they are going through.  It is a whole other thing to watch these kids at the Hem/Onc clinic.  And I see them.  I hear their cries and screams as they are poked, prodded and hurt.  I watch them unable to walk.  I see them giggle and move around attached to feeding tubes and IV poles.  I see them carrying their puke buckets.  I see them expand into little round apples or whither away from toxic drugs being pumped into their bodies.  All this to save their lives. Madelyn was there not so long ago and the reminders of her fragility are there.  She is doing well yes.  But she still has nausea, pain, heart burn, constipation, trouble with neuropathy and is taking chemotherapy every single day.  I am so sick of wondering, worrying and waiting.  Relapse is like a dark shadow following me around.  Knowing that it was hard for Shelly to see all this for one day is somehow comforting. 

I spoke to my doctor recently about my impatientience with the irrelevant, my easily agitated startle response and my inability to make real decisions.  I seem to only be able to deal with the now and extinguishing my life's little fires.  My doc and I decided two things.  I will increase depression medications for awhile and I will disconnect myself from some of my Leukemia support groups.  I have also made some decisions for me.  I decided to not feel guilty about our extremely long vacation next month.  I decided to ask for an exorbitantly large birthday present - which I am writing to you on.  And I booked an art photography workshop for myself sans kiddos and hubby.  Amen.

So listen to this... drum roll... no seriously...This week I have read a book of fiction.  I am on chapter 3!!!  I have not been able to read a book of fiction since Madelyn was diagnosed.  I've been reading about cancer (surprise there), writing, art, photography, parenting, cooking, wine... but anything requiring a suspension of disbelief...  Nope.  Haven't been able to get past page 15.  I am on chapter 3!!  

Madelyn's ANC was still running a little high even after last months chemo increase.

Hem 36.2    WBC 2.7    Plat 250    ANC 1863

So another chemo increase this month with a CBC check in two weeks to see how she is responding.  The doctor also increased her Gabapentin - the medication that is helping her feet and ankle neuropathy.  It seemed to help for awhile, but she was still having episodes of pain and difficulty running last month.

We are on day 3 now of steroids and it has been a good week.  Not too much emotional turmoil, only one day of crying as she went into school and she - sorry - has been pooping!  Yay for early Miralax dosing...  She even went to her baseball game on Tuesday night and could you  tell that my girl had just had a spinal tap to put chemotherapy in her central nervous system? An infusion of chemotherapy into her blood stream?  Nope.  Go Eagles!


A piece of big news.  A asked Madelyn's Oncologist when she would be done with therapy.  She game me an exact date!  January 31st 2013 we are going to be doing some major celebrating some where, somehow.  

Here are some pictures of Madelyn and Sophia from this weekend photography shoot at Fidalgo Dance Works:

Madelyn with her best bud Alaina Fowler.

Ummmm.  Ya.  So freaking adorable.  

This girl, Miss Alaina, has been MJ's best girl for years now.  Didn't make one difference to Alaina whether Madelyn was in the hospital, not feeling so good, bald or cranky.  Confusing, yes, but all Alaina wanted was her friend to play with.  Alaina has stuck by Madelyn and Madelyn by Alaina. I will treasure this picture forever.

Anacortes American

Madelyn was on the front page of the Anacortes American today!  Check it out everyone!  Sooooo cute....

http://goanacortes.com/arts-and-community/entry/cowgirl_bucks_cancer_cares_on_dude_ranch_trip

May 9

Madelyn was at Island Hospital on Monday afternoon for a CBC and ALT lab work.  Her counts are still where they want her to be... i.e.  the optimal immuno-suppression.  I am still waiting to hear how her liver is doing...


Hem 34.4    WBC 2.2    Plat 266    ANC 1,232


Platelets and Hematocrit are a little lower than usual, but still in the normal range.  ANC did not go down much from her recent chemo increase.  I suppose we'll be looking at another increase in a couple weeks.  She is definitely feeling the increase on Mondays.  (This is when she gets the double dose sometimes triple dose of chemos).  We have started routinely giving her Zofran (anti-nausea meds) the evening she takes this battery of pills and first thing in the morning.


Madelyn has been more tired than normal this week - for it being a good week.  It may be her new medication - Gabapentin - she started to take for neuropathy in her feet and ankles.  This should stop (we hope) after her system gets used to it.  Peter and I feel the Gabapentin (or Gaba Gaba as it is known in our house)  is helping though.  She hasn't complained of pain, hasn't had a falling episode and is noticeably running better.  


MJ was finally able to start Little League this week and in usual Kuhnlein fashion we were all there to cheer her on - including our close friend Ashley.  MJ is super, super excited about playing!  And for two people who don't know anything about sports Peter and I think she is pretty good (We don't know when the Super Bowl or World Series games are even on TV every year).  Man can she throw!  She's pretty good at watching the ball, she has no fear of sticking her mit out there to catch it and can really wack it!  I asked her if she wanted to go play with me the other day and she said:


"No Mama.  You and Daddy aren't very good at throwing the ball to me.  Let's call Grandpa Jim and see if he can play."  And so we did :)

duped

As many of you close to me know, I am part of an on-line support group of care givers of kids with ALL - Madelyn's specific type of Leukemia.  We all email information, questions, happenings, triumphs and disappointments.  Back in January I posted that a 14 year old girl Leann, after a heroic battle, had passed away.  I was so devastated for this family.  I had been closely reading and following Leann's story for months.  



http://madelynjill.blogspot.com/2012/01/jan-18.html


Well, today I found out Leann and her mother Karen were a fake.  This girl never existed.  It was this woman's way of getting attention.  It is a mental disorder called Munchausen By Internet.  


I am speechless.

April 23

The big, BIG news first:  MADELYN STARTING RIDING HER BIKE!  She went straight from scooting to riding (no training wheel please).  I can't tell you have unbelievably excited and happy this made Peter and I.  I can't wait for family bike trips!  Sophia, I'm sure, won't be too far off - she has to keep up with sis for peat's sake!  Madelyn is stinkin' adorable riding that thing.  Especially when she rides it to dance class complete with tutu.  


If you keep up with news in Seattle you probably heard the story about the "blue trees" in downtown Seattle by Australian artist Kon Dimopoulos.  He painted the trees around Westlake a bright blue (not harmful, water-based paint).  It was pretty cool.  Madelyn and I happened to stay in a hotel close by after her ER run last week.  We were walking by and she went right up to the artists helping and said "what are you guys doing?"  They told her and then she said "can I help?"  So in true Madelyn fashion she was part of an international art project.  By the time we arrived back at our hotel she was covered in blue :)  The artist and his wife sent Madelyn and Sophia a sweet note and package (with two stuffed Australian Koala bears!) saying thank you for her help.


http://www.kondimopoulos.com/thebluetrees/westlakeparkseattle/


http://seattletimes.nwsource.com/html/localnews/2017895829_bluetrees.html

Madelyn had her appointment at Seattle Children's on Monday...  i.e. she feels pretty yucky right now.. but that girl just keeps on going!  Her energy is low, she feels week, she is in pain and nauseated.  She has needed a nap each morning, but has made it to school around 9:30am or 10:00am.  Madelyn's school is a small, busy, bustling place.  There is always a lot of wonderful activity going on.  But if Miss Madelyn is tired well... she doesn't care one bit.  She pulls out a blanket and pillow, finds a corner and settles down for a power nap.  All of her buddies know she has a week of "not feelin' too good" and then she we will be back to being Madelyn.    


Her counts this week:


Hem 37.1    Plat 258    WBC 2.5    ANC 1362


They are pushing the chemo again- increasing her daily 6-mecaptopurine.  She will also start on a medication to help with neuropathy.  Unfortunately, it is starting to rear it's ugly head again.  She has been having ankle and foot pain and complaining of a feeling "pins and needles".  She has also begun falling more than is normal.  She asked me to make sure and talk to the doctor about it. So I made a note on my monthly list of questions and then asked Madelyn to talk discuss it without any Mommy involvement.  It was a pretty cute conversation and Dr. Jessica was impressed with how well and coherently Madelyn spoke about how it felt.


Other than that she is super busy being six years old right now.  Lots of tutu wearing, dance class going, horse drawing, swimming (like a fish) and getting very close to that "click" moment when reading starts to make sense.  (I am been feeling the need to brush up on all those vowel rules.  It's really hard to help her with reading when I don't even know why we say it like that!)  She is getting excited to start softball for the first time.  She got a glove and bat with Grandpa Jim last week.  And man, of man, does that girl know how to hit and throw the ball!  


Peter and I are beginning to think about the end.  I know, I know... it is still 10 months away.  But that isn't a year anymore!  That is only 10 more "bad" weeks.  I hope my heart will be able to take going off chemo.  The waiting, the watching, the hoping for no relapse.  

Here are some recent photos of my beautiful, strong, spunky, super fantastic, sparkolicious girls...

little Mia

Please send love and light into your world today. 

There is a Mama and a Daddy and a little brother waking up this morning to experience day 2 without their precious baby girl and their forever buddy.  It is a devastation I can not understand.  And it is tearing me up inside.  I can’t stop crying.  This could easily be our reality or our future.  Little Mia fought from age 2 until age 5 and now her family will fight to try and continue to live without her.

Please send strength to our oncologist, Dr Jessica Parker, and our wonderful team at Seattle Children’s.  They have been fighting for Mia too.  Pediatric Cancer includes days like these, but I am sure it is never easy.  I’m sure it always touches a raw place inside.

Rest in peace little Mia.

more ER runs

Quick update today... 


We had another ER run over the weekend.  Poor honey.  By 5pm on Saturday night before Easter Madelyn was screaming from pain in her ear.  It was exactly the same as three months ago coming home from Leavenworth.  I called the on-call Oncologist at Children's and they instructed us to go to the ER at Island Hospital.  Phew.  We were in and out 1.5 hours!  Yup, ear infection! Antibiotics were started by 8pm.  She was in bed by 9pm.


She is feeling great now and headed back to school on Tuesday.


It was a hard decision to send her back to school and come off Lock Down.  The Whooping Cough outbreak is still at epidemic levels in WA State, but the few cases loosely associated with the school were two weeks ago.  And we are all going stir crazy.  Madelyn and Sophia have both been spilling over in smiles and energy since going back.  We will still try and stay away from "people" places... but back to school is good for us all...


We went to Island Hospital on Monday for counts.  She is back to HER normal counts - the right level of immune system suppression. 


Hem 34    Plat 338    WBC 2.8    ANC 1397


ALT (liver toxicity) is on the rise again... we will continue to monitor that. 


Our next appointment is on April 23.  I hope I have nothing to report until then!

April 3 - bag was needed

Unfortunately, that packed bag was needed.  Darn it!  


Sophia's fever was gone and she was feeling much better by Friday, however, Madelyn was noticeably sick.  A fever of 101.5 presented itself Sunday morning so it was off to Seattle Children's ER for MJ and I.  (As soon as Madelyn gets a fever of 101 we have to head to the hospital).


We were in the ER from about 1:00pm until about 6:00pm.  They accessed her port, pulled blood for CBCs and blood cultures and two different instruments were put up her nose for viral tests.  We are talking wayyyy up her nose, poor honey.    Those tubes and swabs looked like they could have reached her stomach.  


Her CBC came back with an ANC of around 7,000 and WBC of 6.2!  Her little body was obviously fighting something big time.  I had never seen these numbers from Madelyn before and they concerned me so I asked them to talk to Oncology.  Poor Madelyn.  That talk resulted in another swab being stuck up her nose and seemingly down to her toes.  By this third nose swab / torture she was over it.  That girl knows how to scream when she wants to and boy did she scream bloody murder.  I did't blame her.


Mom's of cancer kids often get called Mom-acologists.  We learn a lot going through this process.  We learn a lot about the medical "stuff" but also gain the confidence to always ask questions, clarify and help make decisions.  I saw this in myself several times in the ER Sunday.  Here are a few examples:


Without being asked I immediately indicated that I didn't feel Madelyn's counts would probably be low because she just finished a five day pulse of Dexamethazone.  I thought a Whooping Cough test might be in order due to possible contact at school.


The amount of blood they drew from Madelyn did not seem enough to me for doing a CBC and blood cultures.  As they were leaving I asked them about it and they said we don't have orders for blood cultures.  I was sure this was wrong.  They called and yes there was a mistake.  The blood cultures were needed but were missed in the orders.


When I was speaking with the Nurse Practitioner in charge, Madelyn's IV pole started beeping.  Her bolis of saline was complete.  Without stooping my conversation, I turned off the IV machine alarm.  The NP said "I can't believe you know how to do that.  I don't know how to do that."  


The ER nurses and NP were all very nice to us and MJ enjoyed all the attention as usual.  She took a nap, had snacks and watched a little Thomas the Train on the IPad. 


We were released from the ER around 6pm but were still unsure whether we would be picking up some additional medicine at the pharmacy.  So we killed a little time reading books in the car and picking up dinner at the grocery store.  I decided it would be best to stay in a hotel that night as I wasn't sure what the blood cultures would show.  If they were positive it would mean heading back to the hospital for IV antibiotics and possible in-patient stay.  Plus I was tired.  I really didn't want to drive all the way back home.  I also didn't want to go to my sisters and bring MJs sickness to her family.


All the tests came back negative!  We heard some initial results that night (no meds to pick up right away) and the next morning blood cultures were negative.  She has a common cold.  Hooray for a cold.  


Even though it is stressful and exhausting it doesn't bother me at all to make these ER runs.  If it's nothing.  Again, hooray and I can rest easy.  If it is an infection that needs to be dealt with immediately, I know we got there are soon as it presented and we are in the best hands.  It is just a no brainer.


Tonight, Tuesday, she is feeling much better; just a little run down and no more fever!  She is also done with her steroid side effects and we have our Madelyn back!  As far as I go... Lock Down (due to Skagit County Whooping Cough outbreak), plus sick kids, plus lots of classic Seattle spring rain = ughhhhhhhhh.  Mama is feeling close to loosing it.  :)