N Avenue Beach Restoration Project in Honor of Madelyn

We have had an outpouring of offers for help, concern and genuine love from our friends and family at home.  We feel  so in love with our community.  We are thankful we chose Anacortes as our home... to plant our roots and raise our children.  

Our friends at Fidalgo Dance Works, asked us if they could help by collecting donations for Madelyn's 2-3 years of treatment during the winter dance concerts.  (Madelyn was so sad to not be up on stage during the Winter Celebration performance.  She had been telling everyone about it and her penguin costume for weeks....).  Peter and I talked about it and rather than raise money for hospital bills (so intangible and hard for her to understand), we would like that money to go towards something very concrete in her mind; something she can really understand and be excited about.  

We have asked that contributions be made in Madelyn's honor to clean and develop N Ave Park in Old Town. 

Because she WILL be home again.

Madelyn loves this beach. Living just two blocks away, we frequent this little park on the water.  It has nice sand, good throwing rocks, shells, birds and a beautiful view of Guemes Channel.  Madelyn’s preschool, San Juan Montessori, also uses this beach for play and for teaching.  It is a small, special little spot in Old Town, used by many in Anacortes, but it is in need of cleaning and beautification.  As Madelyn told her Grandma, "they are going to get money to clean up smokers and trash in the sand at my beach Grandma!"  Already it is giving her something to look forward to when she returns.  She can feel that love from her home.

To donate to "Madelyn's beach" N Ave Park:

1.  Write a note:   donation for N Ave Park in Honor of Madelyn Kuhnlein

2. Mail check to:

Anacortes Parks Foundation

PO Box 1902

Anacortes, WA  98221

Or call the office at:  360-293-1918

Here you can see it listed on their list of projects on the website.

http://www.anacortesparksfoundation.org/projects_progress.cfm

Thank you and we love you all... Lisa, Peter, Madelyn and Sophia

Chemo Day

Overall a bit of a hard day for MJ.  We had labs at 9:30am this morning, followed by a provider appointment.  When her Port was accessed it was slightly bumped off center and it was painful for her.  They finally got it adjusted and decided to quickly do her chemotherapy infusion while in our provider appointment (rather than waiting until our 12noon infusion appointment).  Then they could just get that needle out of there for her.  Children's is great about this - getting it done for the comfort of the child.  Here are some pictures from the morning / day.  She also had a physical therapy appointment in the afternoon to start with exercises for her walking.   The chemo she had today also makes her constipated.  With the amount of food she is eating, due to the steroids, this just added to her discomfort.  We started some other meds to help with this tonight.  She was in bed at 5:30pm this evening.  

Children's Hosptial has a group of people called Child Life specialists that work with kids to understand what is happening to them.  Here a Child Life worker is reviewing with Madelyn what is going to happen before her Port is accessed.

Even though she can't feel the needle going into her Port, it is still scary. It is a big huge needle being shoved into her chest! We put a numbing cream on the site at home one hour before she is accessed.

Port getting ready to be cleaned before her blood draw.

Port causing her some pain today.  This is unusual.

She looked like this most of the day.  Eyebrows pushed together.  

This has always a clear sign that she is not feeling well.

Sophia did not forget that at the last provider appointment she got chocolate milk.  As soon as our ARNP walked in she was asking for it...

While we were waiting at the pharmacy for some prescriptions it struck me how small and vulnerable Madelyn looked sitting under this huge native sculpture towering above her.  Even though in pain, she finds a smile to give to me unprompted.  It is a forced one, but she was trying... for me.  

Madelyn not feeling well, while buzy sister just can't sit still in the background.

Life in Seattle

It has been a good week so far.  Hard to believe today is Thursday.  Madelyn and Sophia seem to be slowly adjusting to a new routine.  


Poor Miss Sophia has had a hard two weeks too. While Peter and I were in the hospital with MJ, she was well taken care of by my parents; but she was out of her normal routine and away from us for a long time. She had to say goodbye to us after each visit, had a long drive coming and going,  and was not seeing her Ashley.  Before this all started she was basically potty trained and sleeping in a big girl bed.  Now we are back to diapers and a crib.  Poor thing.  She has felt the effects too.  Today, though, I feel like she is seeming a little more like her happy, lively self again.    


I thought it might be nice for you all to see some pictures of where we are now.  We have an apartment 1 mile from Children's Hospital right next to Magnson Park on Lake Washington.  It is actually quite nice.  The apartment complex is built for University of Washington students with families and has a gym, small park, community center, Montessori school and day care less than 100 steps from our front door.  Peter has had to deal with all of this "stuff."  I just can't handle thinking about finances or logistics.  My brain doesn't seem to work.  Peter found this place and it is perfect.


We have a two bedroom apartment.  The larger bedroom has a study nook and a walk-in closet.  This is the girls' room.  The study nook is Sophia's "room" and the large closet is like a little play room.  Peter and I's room has a bed and a few clothes, but looks more like an office.  We have finally setup our computers here and are starting to speed through projects for clients so Christmas gifts can get to loved ones on time.


Madelyn is feeling, overall, pretty good this week.  We went to the playground today and Magnson Park has a large dog park.  She loved seeing all the dogs.  She just walked right into the middle of them without any fear.  She is starting to feel more of the ramifications of the drugs.  Her belly and checks have swelled considerably and I swear she weighs 10 lbs heavier.  Her walking is still labored and very slow.  She eats every two hours during the day and every four hours at night.  We are up frequently.  Spirits are overall quite good though.  She drew a picture for her doctors today and asked me to help her write out "thank you doctor for taking care of me."  So hard not to cry...


We had a group of U of W / Children's Hospital physiology researchers contact us to be part of a study about the impact of diagnosis and how families cope.  Science is very important to both Peter and I so we said yes.  Madelyn and I were hooked up to electrodes and monitored for two hours today.  We played games in a controlled way and will continue with interviews and questionnaires for the next two years.  The goal is to better help families in the future.


Tonight one of my oldest and dearest friends in the world came with her two sons and most wonderful husband in the world.  They brought us dinner and Jason cleaned my kitchen, dished up all the food and dessert, put away all the left overs and took out all our garbage and recycling.  THANK YOU so much Chris and Jason.  I love you so much.  It is really comforting to know they are close by...

I took this just a couple of days ago.  I can't believe this sweet, brave, 

baby girl of mine has cancer.  She is FOUR years old!  This is just wrong.  

If only I could change places with her...

Children's Hospital has a program called the Beads of Courage.  It provides innovative and supportive care programs for children coping with serious illness.  www.beadsofcourage.net. 

Every time MJ has a certain procedure, treatment, ER visit, etc, she gets a bead.  Her necklace will grown with each hurtle.  Here are a few more things she earns beads for: bone marrow biopsy, chemotherapy, hair loss, sleepovers at the hospital, having her Port accessed, 

Lumbar Punctures, blood transfusions....

Blowing bubbles outside our apartment.  

Hard to believe that this beautiful hair will be gone soon.  We keep talking to her about this and using the words chemotherapy, treatment, blood disease, Leukemia and cancer.  We want these words to be a fact of life and not a source of unease.  MJ and I discussed it and we will both be getting pink wigs soon.

Looking in the gym windows.

Playing in the small park in our apartment complex.

MJ's room.  

Note her Evil Eye (we got this for her in Greece when she was 18 months old) to protect her and the native dream catcher from Grandma Harriet to take away the bad dreams.  

Craft area in the closet with pictures of all her buddies.

The study nook.  Phia's "room."

Grass lawn in front of our apartment.

Ready for Christmas.

MJ and Phia have their own little tree in their room for all their home made ornaments.  Peter was home on Monday-Tuesday and stopped by to see our friends at Bunnies by the Bay.  They sent him home with a whole box full of goodies for the girls.  We placed them all around their tree so they would see them in the morning.  Plus, I had been thinking I needed a robe here in Seattle (late nights and early mornings) and it was delivered to me.  Thank you Bunnies.  I am all snuggled up.  Somehow it is so very, very comforting to have these Bunnies, robes and snuggle blankets from the "hands" of friends in Anacortes...

Having some much needed "clowning around with Daddy time."

We all had fun this night.  "Miss Jeni" (Jennifer Barcott) from San Juan Montessori is living in Seattle now and came to see Madelyn.  It is soooo nice seeing faces from home. We are looking forward to seeing Ashley on Saturday and Keira on Sunday.

Madelyn showing off her new belly and cheeks.  

EARLY RAPID RESPONDER!!!!! Wooo Hooo!!!

Monday Dec 6
Hi everybody... it's been a busy last two days.  We started the day yesterday Sunday with getting our Christmas tree and starting to decorate it.  Then Madelyn became extremely tired and pale so we were worried.  We called the on-call Doctor and he said to head to the ER to check her blood cell counts.  Luckily, they were excellent yesterday.  I have a feeling she just got overly tired from the fun of Thanksgiving the day before.  


This was the first time I had to "stay behind" too.  That was hard.  Madelyn has been very clingy to Peter during all her procedures and accessing of her port.  I think his big strong arms make her feel very good.  She wanted Peter to go with her and so I had to stay behind with Sophia.  I was glad my sister Kim was there for a visit.  It was hard to sit and wait the 3 hours to hear how she was doing.


BUT today we had fabulous news!  The results of her bone marrow biopsy came back by our appointment today and what we were praying for has come true!  She is an Early Rapid Responder.  Basically the chemotherapy is working in it's current regiment and she will not have to go on a more aggressive treatment schedule.  This also increases her survival rate significantly.  It also means she will not need her additional bone marrow biopsy that was scheduled for this Friday.  HOORAY MADELYN!!!!!!


I am just now having a few minutes to myself... both girls are napping at the same time... and I am just crying.  I am soooooo happy for Madelyn.  Her tiny little body is fighting back big time.  This is day 8 of her chemotherapy and they like to see less than 5% Leukemia in order to be labeled an Early Rapid Responder.  She had 2%!!!  This is just AWESOME.  


Also her ANC (that number that tells us how well she can fight off bacteria, infection, etc) is at 1300!  This is just amazing.  Normal levels are over 1,000.


She is such a big girl.  The nurses continue to be impressed.  Continuing to only want to swallow pills, helping the nurses removing tapes and bandages, and being goofy to make them laugh.  


She is starting to have a little trouble with her walking.  This is a usual side effect of one of her chemotherapy drugs called Vincristine.  It effects the nerves in her limps and makes them "not work right" as Madelyn says.  She will start some physical therapy soon for this and it should cease when she stops the Vincristine.


I want to thank everyone who is sending us wonderful notes of encouragement.  I may not respond right away but only because I have not had the time.  Keep sending them.  Peter and I both love them.  Truly it raises our spirits.  It feels so good to read all your notes and to know that you are all thinking of us and especially our Madelyn.


I also want to tell you all how amazing our families are.  Urs, Harriet, Terry and Jim with our friends Tony and our sweet Ashley, packed up our house, let us borrow lots of stuff and moved us into the apartment.  My sister Jen got everything we would need for handing Madelyn's chemotherapy drugs and helped me completely disinfect the apartment before we moved in.  My sister Jill has been making calls and dealing with our KP Studios "stuff."  Jim and Urs bought us new tires and had them installed.  The window of our car happened to break two days before this all started and they got that fixed.  Jim completely cleaned out our car.  I'm talking vacuum and a clean.  Man o' man... that was probably about the grossed job EVER.  Terry organized a whole Thanksgiving dinner that arrived on our door step on Saturday. We are beyond thankful.


Ok,Madelyn just woke up from her nap.  Those steroids... hungry again... more soon...


Much love... Lisa 

Hospital Week in Pictures

Day 1: after being admitted the night before.  Here she is on the first day getting waiting for her first Bone Marrow Biopsy and Lumbar Puncture (spinal tap).

Here she is on Friday before her surgery to place her Port-A-Cath in her chest.

Watching the nurse remove her IV from her hand. Only a few hours after surgery her Port-A-Cath is ready to use for IV, to draw blood and to administer her chemotherapy.

Showing off her Port-O-Cath.  Braver Girl...

Talking to Miss Holly, Miss Tina and Alaina at San Juan Montessori.  Oh boy, did this maker her happy...

Watching a movie with sister...

Playing Noodle Face.  Yes, we encouraged it :)

Making Princess tiara's with Auntie Jen and Taylor (her older brother Simon was room buddies with us.  Simon, 5 years old, has been battling Leukemia since March).  Auntie Tisha, in Tucson, sent the tiara making package.

The bikes at the Seattle Cancer Center unit.  Phia taking a spin with Daddy.  There was also a play room for the Cancer unit.  The kids here are not allowed to the big playroom in the hospital. Their immune systems are not working as they should and are very susceptible to infection and sickness.

Dude, her hair is so fine and so straight.  Every morning MAJOR bed head and tangles.

Hooray!!!!! Discharged from the hospital... leaving the cancer unit.

You collect a lot of stuff when you are in the hospital for a week.  Most of this is gifts from friends and the hospital.  Seattle Children's is an amazing place.  We are so lucky to have this hospital here.

Seeing the apartment for the first time...

Friday Dec 3 1:00pm

Well the prepared us for being at the clinic all day today, but were back to the apartment by 11:15am (we arrived at 7:30am).

The morning started with having to wake up MJ at 6:00am.  She slept very poorly last night because of the steroids she is on.  They make her hungry and unable to sleep very well.  She wasn't too happy about being woken up :)...

We had to take off her bandaids around her port-a-cath site in order to put the Elma cream (numbs the site).  She didn't want us to do it.  She did it herself.  Then she took her meds.  She is amazing.  She has decided she would rather swallow the pills rather than have them crushed and in cherry syrup.  SUCH a big girl.  This will make the next 2 years of medicine taking soooo much easier on her... and us.

Her blood counts were SUPER good today.  The number we really look out for is the ANC.  This number basically tells us how well she can fight off infection.  This is one of our major sources of worry right now.  Infection.  A normal ANC is around 1,000.  Madelyn's while in the hospital was around 150.  Below 200 we have to be very concerned and careful and she is automatically put on a broad spectrum antibiotic - everyday.    The day we left it was 217 (hooray!) and today at her blood draw it was 435 (hooray, hooray, hooray...).  She can't attend school until her ANC is above 500. However, unfortunately it's not looking like she will be able to rejoin the San Juan Montessori for the remainder of the year since we have to be in Seattle for about 6-9 months.

Her Port was "accessed" for the first time today.  This was very scary for her and she cried and screamed.  Never one to be shy about how she is feeling;  somehow I am proud when she screams.  She's just not afraid to let everyone know she hurts, is scared and doesn't like it.  This will get easier for her as they will be accessing the site 1-3 times a week.  The cream numbs the area so she doesn't feel the needle going in... but it's still scary.

She is always nervous going into the procedure room.  She likes to sit in Daddys big strong arm and have me read her a book to distract her.  She was just happy as a clam as she woke up and could - FINALLY - eat!  She was great until we got home.  She ate lunch and then started to feel nauseated.  She is taking a nap now with Peter and I suspect she'll sleep a long time.

We won't have the results about whether she is a Quick or Slow Responder until Tuesday next week unfortunately.  The nursed clarified for me that she is Standard Risk... but now we are just accessing whether she is responding quickly or slowly to the chemotherapy.  If it is slowly, she will start a more aggressive chemotherapy.

Tomorrow we are having a Thanksgiving dinner for Madelyn at lunch time.  We are keeping it small since she will not be feeling too good: Grandma Terry, Granpa Jim, cousins Lucas and Becket and Auntie Jill and Uncle Emmett will be there.

Thur Dec 2 9:30pm

Madelyn had a wonderful day today. Alaina and her Daddy, Jeff, came to visit. Sooooo happy. Tonight we are preparing for our all day at the hospital tomorrow. Appointments start at 7:30am. We'll let you know as soon as we do the outcome of her being either Standard Risk or High Risk. Keep your fingers crossed for Standard Risk...

Wed Dec 1 10:15pm

Another good day for Madelyn. She was discharged from Children's today!! We were actually to the apartment by lunch. When she climbed in the car she said "phew, sure feels good to get out of the hospital Mommy." I agreed. We took her to the new apartment and she  seemed to like it. It is confusing for both her and Sophia. When we called the apartment "home" Sophia said "This not my home! I want my home." So we have decided to call Anacortes "home" and the Seattle place "our apartment." To help a little in their understanding.

Madelyn has been receiving so many packages... they make her soooo happy. Thank you, thank you Ashley, Erica,Harrington's, Rutz's, Miss Silja and Emily and Anya, Auntie Tisha, Auntie Jen, Auntie Dixie, Heather Mac and clan and San Juan Montessori. so nice to see her smile.

She was off to bed late this evening. We have to give her a steroid in the evening as part of her cancer fighting treatment. Keeps her from sleeping when she's tired, makes her antsy, moody and HUNGREY Never seen that girl eat so much...

Tomorrow should be a good day for her Alaina and her Daddy are coming to visit! But Friday will be a big day: chemotherapy in her Port (being acessed while she is awake), chemotherapy  directly into the spinal cavity (via spinal tap) and another bone marrow biopsy. The biopsy is important: it will tell us if the current chemo therapy regiment is working well. If it is she will be labeled a Standard Risk patient. If not she will be High Risk and need more intense and longer treatment.

Tues Nov 30 9:30pm

Madelyn had a good day. She even road a bike around the cancer unit. They have bikes at Children's that the kids can ride around the halls in.

My sister Jen and I spent about three hours disinfecting the new apartment. We have to be so careful with her little immune system. Then at 3pm, all four of our parents arrived with our friend Tony and moved us in. Tony is letting us borrow his couch, dining room set and bed for Peter and I. Madelyn has a bed and will be sharing a room with Phia. We have a Christmas tree to set up and hope to get that up before she arrives tomorrow. I plan to get up really early to get the house looking homey for her. 

Poor little Phia has been missing us terribly. she wouldn't let me out of her site today when they arrived from Anacortes. So Peter is at the hospital tonight and Phia and I are sleeping together at the apartment.

Keep your warm thoughts and prayers coming for MJ so she can leave the hospital tomorrow as planned. No fevers for 3 days now!

Tues Nov 30 10:30am

Madelyn having a very good morning. She woke up at 8am and had a long snuggle with Daddy.  She played Princess Bingo with her room mate who also has Leukemia and is 6 years old. She spoke with Alaina's Daddy Jeff, Miss Tina, Miss Holly and Alaina this morning on the phone this morning. This made her soooooooooo happy. She danced to the bath tub. She will be off the IV most of the day today today, preparing her to head home. she is currently eating a snack of apples, crackers and juice... and very happy. being very Madelyn.

5:30pm Mon

Madelyn tired tonight. Her Lumbar Puncture was pretty stressful for her - scary. luckily she was able to go under sedation in Peters arms. The chemo is giving her a little upset stomach and her port site is a little painful.

A summary

Hello dear friends... we have had so many kind words and offers for help.  We love and thank you all.  We have started this blog so you may follow Madelyn's progress through her chemotherapy treatments in the coming months.  


I thought I would begin with a summary...


After some alarming test results on Tuesday Nov 23rd, we traveled to Children's Hospital in Seattle, arriving at Emergency at about 6:30pm.  On Wednesday Nov 24th, she had a Lumbar Puncture and Bone Marrow Biopsy.  Later that day she was diagnosed with Pre-B Cell Acute Lymphoblastic Leukemia.  On Thursday, Thanksgiving, all the grandparents came to visit.  On Friday, she had surgery to place a Port-O-Cath in her chest.  This will enable her to receive her chemotherapy and IVs with less "pokes."  Late Friday night she began her chemotherapy, continuing into Saturday.  Today Monday, she received another Lumbar Puncture inserting chemotherapy directly into the spinal area.  She also received two shots of chemotherapy in her legs.  


Right now her mornings are quite good and sleeps through most of the afternoon.  Her spirits overall are good.  The nurses have been very impressed with how well she takes her medicine and allows them to poke and prod her so frequently.  She hasn't had too many problems with side effects yet, but she is only a few days into her therapy right now.  She is looking to be discharged on Wednesday right now.


She is missing home, friends and school very much.  Pictures of home and her friends are the best thing for her right now.  Ashley came to visit her yesterday and that made her extremely happy. 


More soon,  Lisa and Peter