9 more days!!

9 more days... 9 more days... 

9 more days...

A few pictures from the months of January - April 2011:

in January we were able to go home for the first time in five weeks.  It was a wonderful feeling to be in Anacortes again.  It was a gorgeous winter day and we went down to our beach, N Ave Beach, and relaxed a bit.

January, February and March we did a lot of driving back in forth.  We were in Seattle for treatments and physical therapy 2-3 days and then home for 4-5 days.

 

yay... home...

Playing in our own back yard again!

Madelyn was able to celebrate her fifth birthday at home with friends and family.  On her actual birthday we had a small party at Grandma Terry and Grandpa Jim's.

Then a few nights later we had a big BASH of a party with all her friends.  The theme was NY Dance Party complete with disc ball!  It was both a birthday party and a "going away" party.  We left on March 31st to live in Seattle full time again for 2 months.  We weren't able to be home for these intense 2 months of chemo called Delayed Intensification.

We tried to always think of activities and things to do when Madelyn was feeling up to it.  We day we bought little cameras for the girls and we spent the day photographing 

the cherry blossoms on UW campus.

Playing at the apartment.

Magnuson Park in on the east side of Seattle was neighboring our apartment building.  We went for a lot of walks there.

 

During April she started doing Physical Therapy in the Therapy Pool and then we started weekly swimming lessons!  It was something fun to look forward to.  We have continued to see Tarrah, her swimming teacher, every time we go to Children's the last two years.

My super hero heading in to see the "Stretchy Doctor" aka Physical Therapist.

Madelyn in Physical Therapy.  Sophia is asking her if she is doing all right.  

"You ok Madelyn?  Is anything hurting?"

Laughing at sis during a physical therapy session.

  

During this time Madelyn started drawing furiously   She continues to even now.  It was a true source of therapy for her and know she just loves it.  It is her way of having quiet time.

Sophia had special days with Mommy and Daddy to get her out of the hospital and the apartment.  We tried to plan times were she got all the attention.  Here she and I went out to lunch and she got a hair cut at a special kids salon near our apartment.

Still having trouble walking... Sophia said she needed a ride too.

Struggling with her port accessing.

Not feelin' good.

Inpatient for monitoring.  She had an allergic reaction to one of her chemo therapies.   This was the last night she would have hair.  In the morning it was almost completely gone.

The next morning.  Only a few patches of hair.  She asked me to shave off the rest.

Here she is saving her hair in a zip lock bag.  Yes, we still have it.

 

Her drawing this day was kind of scary; she just kept repeating the same patterns all day long.  It was because of the morphine... but still it was scary and sad.

 

After that allergic reaction we had to keep her on three types of allergy medicines for two weeks.  Basically medicine every 4-6 hours even through the middle of the night.  Madelyn was great though.  Waking up, swallowing her pills and then going right back to sleep.

How I kept track of it all.

The Last 10 days

Saturday was my Moms birthday and we had a great meal planned and a cake made, but by 4:30pm Madelyn had a fever.  Blast!

I just knew she was going to be fine.  When the Oncologist called I said "soooo... we are kinda old hat at this... this is what I'd like to do... I want her to go to Island Hospital.  We are not driving to Seattle tonight.  Could you call ahead to the ER and request all the tests and prepare them for our arrival?"  The doc was great.  She did and we went to Island.  We were there until 9:30pm and then discharged with a diagnosis of a cold and ear infection.  But only after she had been poked, prodded and forced to wait for four hours.  Her counts were excellent, RSV negative and Influenza negative.  The doctor in the ER gave her some IV antibiotics to kick start the ear infection treatment and we were sent home with a prescription.  

Nice birthday dinner, eh?  Well, I ended up having a Birthday Dinner Take 2 the next night and it was nice because my Aunt, Mom's sis, could come.


SO!  We begin our last 10 days of chemo!  I thought for the next 10 days I would take a look back over the last two years.  Each day I will post images from our two year journey.  

Feb 1st will be her last day of chemotherapy!  Again, we are asking people to mail a card or a picture to Madelyn and Sophia with hopeful arrival day being Feb 1st.  Email me if you'd like to participate!  lisa@kuhnlein.com

Here are the first four weeks; November/December 2010:

 

Day 1: out for her first IV Pole Walk and getting ready for her 

first bone marrow biopsy and first lumbar puncture.

Day 1: baseline echocardiogram

This precious thing has cancer???

Day 4:  visit with sissy!

Day 4: showing off her new port-a-cath.

She did a lot of this during her first 10 days inpatient at Seattle Children's.

Day 6: watching cartoons.

Day 11: first full day OUT of the hospital and exploring our new apartment in Seattle.  Look at my beautiful, 4 year old girl...

Our apartment building a mile from Children's hospital.

Sophia so happy to be living back with us again.  Those 10 days separated from her family at 2 years old were confusing and difficult.  She wouldn't let us out of her sight for weeks.

During our first visits to the Hem/Onc clinic at Seattle Children's, Child Life Specialists helped in Madelyn's adjustment to her knew life.  Teaching her what was happening and why and accompanying us through this foreign process.  

Madelyn is listening here, but has that look of 

"whatever woman... basically you are going to poke me and it is going to hurt."

3 weeks into treatment and she is starting to show significant signs of the month long steroids and intense chemotherapy treatments.  Cheeks and stomach ballooning, hair thinning and she is having trouble walking.

Trying to have fun at our family Christmas get together... but reallllllly not feeling well.

Our plans for Christmas changed quickly, but we all got together in Seattle.  

3 1/2 weeks and MISERABLE.

Another lumbar puncture.

Jan 3rd and 30 days....

2012 was a very special holiday season... both Peter and I are having a hard time deciding to take down the tree.  We had 16 people for dinner at our place on Thanksgiving, 20 people on Dec 22nd (my family) and 12 people on Dec 24th (Peter's family and his birthday dinner)!  We also had three Nutcracker performances (Madelyn), the Winter Celebration ballet performance (Sophia), cookie baking marathons, Christmas parties, caroling, a skiing trip to Leavenworth ... and not to mention Santa!!

This is the first day I have felt like I can, somewhat, breathe.  

I say "somewhat" only because poor little MJ is feeling badly from her chemo today.  She had her infusion on Monday.  When she feels bad, I just can't help but feel anxious and sad.

But I am happy to report that I have NOTHING to report!!!

She is still doing well and continues to inspire us daily.  She is the reason we try to make every single day a happy and loving one with lots of trust and laughter.

Man oh man.  What is this joyous, energetic, vivacious girl gonna be like when she isn't on daily medications???  Each drug has listed either "can cause dizziness" or "may cause drowsiness;" not to mention, "can cause nausea" and "may cause belly upset."

Dec 3rd counts were good with no chemo increase, but steroid increase due to growth.

Hem 38.4    WBC 1.8    Plat 213    ANC 1055    ALT 90

It was a really hard week.  Some "Hard Weeks" are better than others and this one was a particularly bad one.  She stayed home quite a bit...

Monday Dec 31
Hem 37.3    WBC 1.9    Plat 217    ANC 1074

She is feeling poorly this week, but much better than the last go around.  Emotionally she is ok (not herself, but ok) and she is having quite a bit of jaw pain, back pain and leg pain (all normal from the chemo infusion).

The exciting part of this month is that we are officially 
COUNTING DOWN to THE END!!!!!!!!!  

Wow.

I haven't figured out how I feel about all this... other than straight-up overwhelmed.  So I am going to force-ably focus on making it special for Madelyn.  We've made a large countdown poster for the house and we are asking people to help make Feb 1st exciting.  If you could please mail a picture or a card to BOTH Madelyn and Sophia and congratulate them on a battle well fought and won!  The goal is for your note to arrive on Feb 1st - her last day of chemo!  We'd love for them to be overwhelmed with love and congratulations.  As you know Madelyn is our superhero and Sophia is her strong, super supportive side kick.  If you don't have our address, email me:  lisa@kuhnlein.com.

We don't feel like we can have a big party on Feb 1st because she won't be feeling very good.  On January 28th she will have her last dose of Vincristine, her last spinal tap to put Methotrexate in her central nervous system and she will begin her last pulse of the evil Dexamethazone (steroids).  During this "sleepy room" visit she will also have her end of therapy Bone Marrow Aspirate where they will bore a large needle into her hip and extract her bone marrow.  That marrow will then be tested for any signs of remaining Leukemia.  I know, its amazing that it could still be there after 2 1/2 years of chemo but Leukemia cells are sneaky and know how to "hide."

Shortly after chemo ends we have a celebratory trip to Hawaii planned to relax and have fun together!  Then on Feb 22nd she will have an operation to have her Port-A-Cath removed from her chest. March 4th will be her first post-treatment follow-up visit which will include a standard echo cardiogram to double check her heart functions.  It will be analyzed against her beginning treatment echo to make sure the chemo has not damaged her heart.

For her January 28th bone marrow aspirate we are insisting on special testing.  Madelyn's protocol only calls for the marrow to be analyzed under a microscope.  We are asking for a more sensitive measure - one that checks for MRD (Minimal Residual Disease).  Here is the reason why:  if Madelyn were to go off treatment and her leukemia came back it would come back with a vengeance;  her fight would begin again and would be much, much more difficult.  She has suffered enough.  I do not want her to go through that again.  Ever.

Madelyn was in remission five weeks after treatment began and all 800 days of chemo since were solely to guarantee she stays there.  Scientists know, unfortunately through trial and error, that residual disease can remain in the marrow after remission is achieved and if relapse occurs it is much more difficult to eradicate.

If they do find Leukemia cells in MJs bone marrow, in these very low percentages that MRD testing provides, we will be entering uncharted waters for our Oncologist.  There is no standard protocol for this situation.  

SO. BE. IT.  

Our Oncologist, Dr Jessica Pollard, is not fighting us on this request, but simply supporting us and letting us know what decisions need to be made.

With that being said... I am keeping my mind and my heart certain that we are truly at... 30 more days...

Front of our Christmas Card 2012:

The MacDonald/Kuhnlein/Greenawalt/Jarnagin Cancer Marathon Cheer Squad.   

Our friends Kimmie Schelling, Eric Schelling and Joel Schelling 

all helped us execute this photo on Thanksgiving.  

Our dearest Ashley Schelling is with us in the photo.

Thank you so much special people!!

Photo by Kimmie Schelling.

Photo by Kimmie Schelling.

Here is the full Thanksgiving crew.  

We were only missing one of my sisters - Kim Jones and her family.     

... don't worry the Christmas photos are coming... they'll be ready in... ummmm... June....

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.