Nov 24

On Nov 24th two years ago my girl was diagnosed with cancer.  Peter and I sat in the middle of five doctors as they told us Madelyn had Leukemia.  It was the most horrible moment in my life.  It was the day before Thanksgiving and we had our turkey dinner at Seattle Children's cafeteria the next day.  We have all come so far in the last two years... but especially Madelyn.  My fear is still there, daily, but it is submerged under years of experience and a positive prognosis.

We are officially counting down now:  68 days until Madelyn is off chemo!!

68 days!

Her last appointment at Children's went well.  She had a spinal tap with her infusion and both went smoothly.  Her counts continue to hold steady:

Hem 36.4    Plat 214    WBC 2.0    ANC 1142

No chemo increase.

While she was asleep she was supposed to receive her flu shot.  However, as she informed me as she was being wheeled out, "Mama, you said I would be asleep and I wouldn't feel the shot!  I was awake! I felt it!"  (She had woken early from the anesthesia).  "But... it didn't hurt so its ok."

She didn't have too much pain the week after her infusion, but had a pretty rough time with the steroids.  I spent most mornings sitting in her classroom.  Three (possibly - we hope, we hope - just two) steroid pulses to go!

Although it is Thanksgiving weekend, I have been wanting to share with you the amazing Halloween dinner my mom prepared for the girls.  I mean, wow.

First year we were able to take the girls ourselves to the downtown Trick-o-Treat.

My little kitty.

Witches Brew drinks.

Demolishing Grandma's cheese dip formed in the shape of a pumpkin.

Broom stick.

Spaghetti.

Bread Bones.

"What?"

Copy Cat... er, Copy Kitty.

End of the night reading with Daddy :) 

Oct 16: DUDE... Three More Months!

No news is good news!

Madelyn’s counts have re-stabilized and she has remained in that happy 750-1500 ANC-zone ever since her last steroid pulse.  Phew.  Those 10 weeks of low counts were very, very stressful.

We have ALL been busy with life for the last three weeks:  finishing the renovation of our attic (complete with permanently installed disco ball), re-envisioning KP Studios and most importantly… adjusting to life as schedule and activity navigators for the Chief Executive Officers of Kuhnlein, Inc.  Wow, soccer twice a week, dance, nutcracker rehearsals and, well, upon request from Sophia, more dance (that’s right 2 dance classes for our four year old prima ballerina).  My feet are running as soon as the first CEO shuffles into our room in the morning saying “can I have some milk.”

But here’s the thing though:  my heart is soaring these days.  My two girls are rockin’ life.

Madelyn is in LOVE with her new school, Mt Erie Elementary.  She loves everything about this new adventure.  She is much like her Mama… always excited about the new experience.  New place, new exploration, new facts to learn, new systems…  in fact the other day she said to me:  “Mama, we need to GO somewhere.  Like, you know, stay in a hotel.  We sometimes go places, but usually we are just here in Anacortes.  I get bored with it always being the same.”  Love it. 

It is never a problem getting her to school.  She wants to be there even during steroid week when she is crying and scared… when she doesn’t know why she is crying scared… when she is tired from no sleep the night before… when her belly hurts from 4 days of constipation… when she is in pain… she still wants to be at school.  She loves learning how her new school works, meeting new people, recess (with a playground!) and is enjoying having real assignments, tasks, responsibilities and subjects (reading, math, science, music, library).

And Sophia!  My, my she is just thriving.  She is defining school for herself this year; she is spelling her name; she is un-abashedly letting her opinion be known and slowly releasing apprehensions;  she swam the length of the pool with a noodle All By Herself and the glow on her face filled everyone around her with light; she is learning her power and wielding it; and she has discovered her own passion, dance.  I am so proud of her and I can’t stop staring at her!  I know I have only days and minutes left of her littleness. 

We were at Seattle Children’s on Monday for the usual:  counts, exam, meeting with Oncologist, chemo infusion and, the best part of the day, swimming lessons.  We also spent the afternoon with MJs Leukemia Buddy Riley who is also 6 ½.  During Riley’s infusions the girls did crafts, watched movies and were able to have lunch together in the cafeteria.  The afternoon involved a lot of giggling and smiling despite the tubes, IVs, nurses and medicines.  After Riley’s 4 hour blood transfusion we went out to dinner at Madelyn and Sophia’s favorite Seattle restaurant, Boom noodle.  Finally as we were slowly making our way to the car to drive home  to Anacortes, MJ, Phia and Riley were running around squealing and being chased by The Tickle Moster (aka Peter).  Mid-sprint, with a huge grin plastered from one side of her beautiful bald head to the other, Riley yelled “Best Day Ever!”  I said to her mom, “don’t you just want to broadcast to the world – look at her – look at my beautiful, fighting, giggling machine – she had cranial radiation, chemo infusions and a blood transfusion today.  Look At Her!  Riley is LIVING this moment.

Ok, one last thing.  We had a long discussion with the Oncologist about… not sure I can write it… January 31^st…  Off Treatment…  End of Treatment…  Last Chemo Day.  January 31^st will be a new holiday!  Party!?  Celebration anyone? Hmmmm….

Madelyn will continue with her oral chemo that she takes every day until January 31^st.  Her Seattle Children’s appointments will look like this:

Nov 5 – spinal tap and chemo infusion

Dec  – 3  chemo infusion

Dec 31 – chemo infusion

Jan 28 – chemo infusion, spinal tap and bone marrow biopsy

Jan 31 – last day of all chemotherapies including steroids!!!! as long as the Jan 28^th bone marrow biopsy comes back negative for Leukemia

Two weeks after the bone marrow biopsy – her port-a-cath will be removed via surgery

She will continue with her neuropathy medication for two months and will continue with her antibiotic therapy for three-six months depending on how quickly her immune system rebounds.

Then… CBC and exam every four weeks for a year.

Wow, 2 ½ years later….  This is really happening…

Madelyn's first grade photo.

Image courtsey of Firefly Images.

And here she was two years ago lying in the hospital bed.  

She had just been diagnosed with Leukemia.

Wow.

Sept 10 roller coast update

The CBC came back as expected during a dexamethazone week.  Inflated numbers:

Hem 39.3    WBC 3.1    Plat 202    ANC 2,661

So she will re-start oral chemo tonight and we will hope that her body will be able to manage it.

We check counts again on Monday the 17th.  

Her week is pretty good so far.  Not a lot of emotional ups and downs, just the usual post-infusion pain, constipation and insomnia.  She made it to school today and hasn't wanted to come home!

Here are some pictures from the first day of school.  Man did she LOVE it.

Sophia's backback is "just sooooo heavy Mama."

she brought flowers to her new teacher

Sissy waiting at the bus stop for Madelyn.  (She is just out of dance class).

The whole fam was waiting at the bus stop. 

Sept 8 Roller Coaster Ride

I am behind on updating you all on MJ.  It has been a rollercoaster ride for several weeks.

On August 21^st her counts were good enough to restart chemo at 50% of her previous dose, but not quite what I was hoping for after 1 ½ weeks off chemo.  I was hoping for an ANC so high that they would restart chemo full strength… and then some. 

Ya, not so much.   ANC was 924.  Not so bad, not so bad.  But not dramatic.

Then Sunday August 26^th Madelyn had a fever.  101.5.  What a surprise!

It was too be a perfect Sunday.   My  sister, Jill (who is Madelyn’s namesake), and her never-a-dull-moment, fun family were here for a visit. The Jarnagin Quad, includes the sweet and individualistic Beckett Ray (8 yrs), the Tough (note the capital T) and yet oh so vulnerable Lucas James (10 yrs)  and the loveable Emmett (aka hubby).  My sister Jill is a little like Madelyn:  always accepting, always smiling, always ready to jump in and DO, always able to chat with anyone in any situation.  Plus my riot of a sister Jen drove up from Kirkland (this is who we usually stay with while in Seattle for treatment) with her hilarious and precocious boys.  AND THEN, the day was to be topped off with dinner at The Harrington’s!  We love this family.  We feel at home and “with” family with Amy, Pat, Brennan, Ryan and Megan.  Such the perfect weekend. 

And then a FEVER!?!?

  

Strait to Children’s Hospital for Madelyn and I!  Madelyn and I left at 10:30am, were at the hospital for 2 hours, discharged and drove all the way home.  Nice God Damn day.  My girl is SIX YEARS OLD!  She should be playing.  She should be eating too much ice cream.  She should be really tired from…. Riding bikes, being at the beaching, playing soccer with her cousins, splashing in the hot tub…. not sitting in the car, not from medications making her drowsy, not from CANCER.

The day, at least, ended on a good note.  My whole family and Peter’s parents were in the drive way waiting for us as we drove up.  All 11 of them waving and smiling.  It made both MJ and I super happy.  Then Amy brought over dinner for us.  THANK YOU, all of you for making a sucky day end on such a good note.     

Two days later she had another CBC at Island Hospital.  She was full on neutropenic.  ANC was 180!!!  What?!@#$  LOCK DOWN.  If she gets a fever now it is strait inpatient.

The clincher, was Peter and I had booked a short anniversary trip to New York.  We were only to be gone from the girls for four days.  My parents, Peter’s parents and Ashley were taking turns watching the girls for us.  Do we go?  It was so stressful deciding.  I talked to other A.L.L. Moms (Leukemia buddies) and I spoke with our doctor.  The doctor encouraged us to still go.  Ultimately, I used my gut to decide.  I somehow just knew it would all be ok.  Madelyn was fantastic.  Full of energy.

So we went.  And she was fine.  And probably they enjoyed themselves more having Lock Down in a different place than at home.  Lock Down is just the worst.  Peter and I had a good time in my old town and we were able to relax.  Our 10 year anniversary day was Koren Spa in Flushing, noodles in China Town, photo exhibit at Grand Central Station, MOMA exhibit, dinner and bar hoping in the East Village until 3:30am.  It was Peter's first time really spending time in the city and I had fun showing him around.  

Madelyn had a CBC on Tuesday Sept 4^th, one day before the first day of school, and it revealed she had rebounded again.  ANC 1049.  Yay!!!!!  She can go to school.

Madelyn could not have been more excited… mixed with that good kind nervousness... she really was on Cloud 9.  Peter went to MJs class at 3pm to read the class Chemo To The Rescue and introduce her class to Madelyn’s cancer.  (It’s a great book: 

http://www.chemo-to-the-rescue.com/images/newbook/Page1.html ).   We had planned to drive her home after, but nooooo, she wanted to ride the bus.  So Peter put her on the bus and I anxiously waited at the curb.

Dude, Mama was an anxious mess all day!  I was not seeing that comin’.    

Madelyn went to the first day of school and then she went to Seattle Children’s :(  I am so bummed that her first two weeks of school couldn’t have been during her good weeks.  The CBC Thursday revealed she was down again!  What the?  ANC 700. 

I am so worried and … All. Worn. Out.

People are often amazed at how much I know and how much I can remember about MJs counts, symptoms and treatment.  “You are so strong and knowledgeable.”  This my daughter… her LIFE … MY life… Madelyn and Sophia are my soul, not my patient. And yet I am powerless against time.  Waiting and worrying, waiting and worrying, waiting and worrying, waiting and worrying… 

Please, please make this the LAST five months of our journey;  Not the beginning. 

This coming Monday morning (Sept 10), during the apex of her Dexamethazone symptoms we’ll be going in for a CBC at 8am and then driving her straight to school.  Poor honey.  Welcome to your first week of school:  Emla cream, early morning pokies, late arrival at school, extra hunger, pain, emotional ups and downs, constipation. Welcome.

If her counts are up, which they should be as the Dexamethazone inflates the ANC, we will restart chemo again.  Hopefully this artificial boost will be what she needs to regulate.

I want my Madelyn to be six years old… not six years old with cancer.  September is national childhood cancer awareness month.  Trust me, I am aware.  

Aug 17 - chemo hold again

Madelyn went in to Seattle Children's on Friday (Aug 10) last week.  Much to our surprise her counts went down again!

ANC 699

Still high enough to get her Vincristine infusion and to have her spinal tap, but low enough to make the doctor want to hold her oral chemotherapies.  

Ugh.  Stress.

It has been a hard week for Madelyn.  She has been in A LOT of pain and has had constipation due to the more frequent use of pain meds.  She has also been experiencing more nausea, than is usual for her, in the last 4-6 weeks (none during her chemo hold).  The doctor explained that often the farther into Long Term Maintenance kids are, the more side effects seem to effect them.  That also explains why we are seeing trouble again with neuropathy in her feet and legs.  She is having trouble with bad dreams during the dexamethazone - she says tigers and snakes are trying to get her.  She is spending about six-seven nights out of the month sleeping with me and Peter is sleeping in the messy Princess Palace.  Her lumbar puncture's are also causing her more difficulty lately.  She is very discombobulated, having more discomfort and more headaches immediately following, and for a couple of days after, the procedure.  

We will be at Island Hospital bright and early on Tuesday next week to get another CBC.   We are hoping for another REBOUND so she can start chemo again!  

five more months... five more months... 

five more months... five more months...

Struggling...

Sophia coloring while waiting for Madelyn to feel better in the after procedure room.  Daddy is her coloring assistant.  "I need red now Daddy!"  

Still struggling... but so hungry from not being able to eat all morning.

In the infusion room having fluids and very cold after her procedure.

watching a little TV

"Sophia?  Earth to Sophia?"  (Watching Dora. 'Nuf said).

Starting to feel better.  

Eating an apple while she gets her Vincristine infusion.  She can taste the medicine as it is going into her port-a-cath... and it tastes "gross."

Aug 8

Finally... I have been able to update our travel blog.  Check out this totally cute pic's of the girls in princesses dresses in a real princess castle :)

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

Aug 7 REBOUND!!!

So Madelyn went in for another CBC at Island Hospital on Monday.  First appointment they had open, 8:30am... we couldn't get there fast enough.  MJ too.  

And hooray!  Her counts have fully re-bounded.  Thank goodness, phew and celebration.  

Hem 33.7    WBC 2.1    Plat 252    

and ANC 1145  !!!!!

She couldn't get to summer school fast enough today.  If it wasn't for Sophia going through a "I don't want to go to school" phase, MJ would have been at the door of the San Juan Montessori at 8am going "open, open, open."

She restarted her 6MP chemo last night and will re-start the methotrexate following her spinal tap on Friday.  

The girls are super excited because we are going to visit my sister Jill's family this weekend in my home town of Port Angeles... Lucas and Beckett, my nephews, are just about as cool as teenagers in MJ and Phia's eyes...

Aug 3 Lock Down

I have been busy with lots of “me” stuff lately… Anacortes Arts Festival, a photography workshop in Colorado… and I have been beating myself up for not getting everything done that I need to or I want to.  Then I arrive back on the plane on Tuesday and get the bomb shell that Madelyn’s counts have tanked.  Her ANC is 288!  It hasn’t been this low since she was diagnosed and Delayed Intensification.  Everytime I start to get selfish there is something to remind me what my real priorities are for the next few years.

So Madelyn is in Lock Down.  Poor honey.  She understands why she can’t go out and she is ok with it… but she still wants to go to summer school, out to dinner, the playground.  Be a normal kid. 

We explain it to her like this:  Your white blood cells are your soldiers.  They fight against infection and germs.  You are supposed to have like 2,500 soldiers, but you only have 288 which is not enough fighting power.  So if you get sick you won’t be able to get better.

Madelyn’s doctors have stopped all her chemo until her counts recover.  It could be A) her bone marrow is just worn out after two years of chemo every day.  Or B) it could be that her leukemia is back (worse case scenario). 

This is a no brainer multiple choice.  A is our answer. 

She goes back in for a CBC on Monday morning.  Then we will see if the six day rest from chemo has helped.  If she still hasn’t rebounded they will continue the hold until she does… She is feeling great and has lots of energy.  That is a good sign I think.  She needs lots of good vibes, energy and prayers that she does NOT GET SICK.  No fevers, no fevers, no fevers…

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 :)