Christmas on Dec 28th

Today was our Christmas Day.


When we walked into our doctor's appointment today, our ARNP said "well, do you want the good news first or just the good news?".  I felt faint.  She couldn't tell me quick enough.  When she did I burst into tears.  Madelyn is in REMISSION.    The recovering bone marrow is without significant abnormal blasts. The chemotherapy wipes out all the cells (good and bad) in the marrow.  The new marrow being produced now is basically without Leukemia.  So of the new immature cells (young cells) she has right now (which is 1%) less than 0.01% are abnormal or Leukemia.  They define this as in remission.


This does not mean complete remission.  That will happen only after 2 - 2 1/2 years of treatment.  From experience and research, they know that if they were to stop treatment now Madelyn would relapse very soon.  So she will still be proceeding through the same schedule of treatment.  What it does mean is that her survival rate has increased even more and the possibly of her relapsing has also decreased significantly.  


She will will also have the lowest effective doses of chemotherapy to keep her in remission.  So the uncomfortable part of chemotherapy, side effects, won't be as extreme.  She will still get nauseated..  She will still loose her hair.  She will still have troubles with walking.  She will still be very tired.  Her counts will still go up and down.  But we probably won't see the extremes of these things. It also means that if she ever did relapse, she has a whole arsenal of higher dose treatments available to her.   Think of it... some high-risk, slow responder kids are already hit with these "big" treatments and still don't get into remission or they relapse.


We had more good news after this.  If her counts remain good and she is able to enter her Consolidation phase of therapy as planned on January 3rd, we will be able to come home.  We ALL will be able to come home.  We are absolutely THRILLED by this news.  We will be able to bring Madelyn HOME!!!!!  We will need to be in Seattle two days a week for chemotherapy and appointments, but the other days we can be in Anacortes.  Consolidation is a four week phase.


We will continue to have a long 2 years; there will be dips and turns I'm sure.  But we couldn't ask for Madelyn to be in a better prognosis position then where she is after this critical first month of treatment.  


I have never felt so sure of my priorities, full of love for my family and so thankful.


Her counts today.  Very good.  Hem 30.6    Platelet 343    WBC 6.1    ANC 1854


The morning started off incredibly rocky.  Our lab appointment was at 8:30am, but Madelyn was up most of the night.  Her insomnia is horrible right now.  She was down at 6pm, but up at 9pm until midnight, down for three hours and then up again at 3am and then up for the day at 6:30am.   You can imagine, 4 year old + weeks of insomnia + anxiety over being accessed that morning = not fun.  But after our appointment it was like a cloud was lifted and sunshine filled all of our bodies.  We made balloons out of surgical gloves, all of us joked, had a family hug and then went down to the cafeteria to meet the Jarnagins (my sister Jill, her husband Emmett).  My nephew Beckett had an MRI at Children's today.  She was so happy to be meeting Auntie Jill and Beckett there.  Madelyn looooooves these two.


Madelyn had an amazing day.  She was happy ALL day.  The Jarnagins came to our apartment along with Auntie Jen.  We had a birthday cake for Beckett and had a nice visit.  After that, me and the girls played for several hours (MJ even sitting on the floor for part of it) while Peter napped.  At 4pm we headed to the hospital to pickup new meds and then went out to dinner!  Huge.  Madelyn was happy, had energy and enjoyed herself the whole time.  She even walked three blocks to the car.  One block was up a hill!  Amazing.

Beckett or B Ray... the Birthday Boy (Dec 27).

MJ playing with Lucas.  Yes, Phia is picking her nose :)

Auntie Jen's cake with a big "B" on it.  

The Jarnagin family (Jill, Emmett, Lucas and Beckett) always make Madelyn happy.  

Lucas.

Christmas

We had Japanese Christmas dinner this year.  Complete with Dim Sum, egg rolls, pot stickers, asian steak with Udon noodles, edameme and fortune cookies.

Grandpa Jim (Lisa's Dad) cooking the steak on the portable BBQ on the camping table.

Madelyn's Christmas place setting.  

Both girls have their own set of chop sticks from Uwajimaya in Chinatown.  

The candle in front of MJs spot was from Grandma Rosie's funeral.  Lisa's Grandma (Madelyn's Great Grandma) passed away just six months ago from Leukemia.  Madelyn lite the candle for us to remember Grandma.  My Mom and her sister, Dixie's, first Christmas without their Mom.

Grandma Terry painted this for Courtney and Kelsey this year.  She gave Madelyn and Sophia a copy of it.

 The Christmas dinner gang including Great-Aunt Dixie, Grandma Terry and Grandpa Jim.  Sophia said "no photo me, no photo me!!!" and ran off.

Crafts from a cool box of things to do from cousin Veronica.

Dec 23

Hem 26.7  Platelets 189  WBC  2.5  ANC 1300


Pretty good numbers, but hard day overall.  Madelyn was awake almost every hour last night.  She was worried about today's "pokies", wanting to go home to Anacortes and hungry.  She was NPO (no food) after 3:30am.  Which, when on the steroids and four years old, is very, very hard.  She didn't get sedation until 11:45am.  Usually she eats every 2 hours.  Plus Peter and I had a "not so fun" experience while Madelyn was going asleep. The nurse started pushing us out of the room before she was fully under.  With no sleep, this was really upsetting for me.  She had another bone marrow biopsy today and chemotherapy injected via spinal tap.  Today was her last day of the Induction phase of therapy and she will begin her Consolidation phase on Jan 3rd (after her counts recover from todays chemo and if todays bone marrow biopsy still shows good results).


Tomorrow is Peter's birthday.  His brother, Matt, with wife, Tanya, will be coming up from Portland and his parents down from Anacortes.  He decided he wanted Sushi via take-out and donuts from Top Pot Donuts.  If MJ feels ok I'm hoping she'll go with me to pick out the donuts.


Merry Christmas everyone.  We all miss you sooooo much.  xoxo

Walking into clinic with Daddy.  MJ said this was her favorite picture.

Worried about getting accessed and verrrrrry hungry.

Getting her port accessed.  Meaning they put a large needle in her port that has been put inside her chest.  Like an IV, but inside her.  For easier blood draws and giving of medicine.  Even though she can't feel it, the process still gives her quite a bit of anxiety.

Waiting for sedation and watching Dora with Dad.

Just before falling asleep.

Mon Dec 20

The weekend overall was a bit hard on Madelyn.  She was not feeling well, but she did have some distractions.  It was my family Christmas weekend or "MacDonald Christmas".  This year it was switched from my parents home to my sister Jen's house, for us.  They live not far from our apartment, across Lake Washington, in Kirkland.   I was really looking forward to having this Christmas party at my parents new home in Anacortes.  After 35 years in Port Angeles, they moved a few months ago to Anacortes.  It has been soooo wonderful having them close by.  Even more so now.  Jen's home is great though - very kid friendly with lots of large open space for playing.  


Madelyn had Chemo on Friday so she was not feeling well on Saturday.  She did a lot of sitting and resting.  She had trouble with stomach pains, heart burn, leg pains and tiredness.  It was a sad day overall for Peter and I.  Usually my family Christmas is very relaxing and fun with lots of laughing.  It was hard for us to see Madelyn hurting and just laying there watching all the kids play.


Madelyn felt a little better early in the morning on Sunday but then started to be very tired in the afternoon.  After a good nap and because her ANC was so high, we decided to take her to the Seattle Aquarium in the afternoon.  We were there for about 1.5 hours and she walked almost the whole way.  This was seriously big stuff for her.  She continued to be in a good mood over the course of the evening.


One of her chemotherapy drugs is a steroid call Dexamethasone.  This is one of the worst for side effects.  It makes her moody, sad, eat ferociously (even getting up around 1-2am for a meal), it makes her belly protrude, gives her moon face (they call it... basically large, round cheeks), she has insomnia and is antsy (it's hard for her to sit still).  Poor thing.


Miss Tina came to visit this morning (her teacher from San Juan Montessori) and spent three hours on projects and reading books.  She seemed so much like her old self.  She was happy, happy the whole rest of the day.


Her hair is definitely on the exit.  It is falling out more and more everyday and she is getting quite thin on top.  Tina brought with her large posters with all her friends from San Juan Montessori, AND Erika and Ashley, wearing a pink wig.  They heard Madelyn was getting a pink wig (a bright blue one too by the way) and decided this would be fun for her.  It sure was.  We have them hanging up on the front door closet so we see them whenever we walk in the door.


Here are some pictures from MacDonald Christmas:

Jen's boys, Soren and Wyatt, have a cool huge train set.  Phia was in heaven.  She carried around train cars all day.

Our goofy Beckett Ray.  Getting for his 7th Birthday in a few days.

Miss Kelsey Jo coloring with MJ.  Age 5.

MJ trying to participate but not feeling too good...

Wyatt with his new jumbo dump truck.  

Check out his special Christmas mohawk.

That's Courtney there on the left (Kelsey's twin sister) playing a game with Uncle Peter.

Jen's living room.  A big play room.  Everyone is playing basketball and football.

Soren and Wyatt (both getting ready to turn 3 years old in a few weeks) trying to figure out what I am doing with my camera while setting up for a quick family photo.

The eldest of the 8 cousins:  Lucas.  Just turned 9 years old.

All the kiddo's.  Yes, all of them :)

Hurry up Auntie Lisa...

The gang.

Soren.  Such a rascal and a heart breaker.

MJ's new hat from Miss Silja.

Fri Dec 17

Pretty good day overall.  We had labs, provider visit and chemo today.  Her counts were pretty good.  Going up slightly.  


RBC 27.6, Platelet 145, WBC 3.6 and ANC 1872.  


The ANC being this high is especially good news as we have the MacDonald Christmas tomorrow... so lots of kids. Her port being accessed went totally smooth.  It didn't bother her at all going in and or going out.  While being accessed she was watching Dora and didn't even look at the needle.  While being de-accessed she told the nurse how best to remove the tape holding it down :)  


Immediately following lunch, we went to the park for about 30 minutes.  We were surprised MJ wanted to go to the park so soon after chemo... but of course we said "you bet!"  Madelyn had a hard time holding herself on the regular swing (was upsetting for her), but we were able to put her in the toddler seat so she had fun.  Later in the afternoon, Madelyn helped me make a pie crust.  We also took a walk/stroller ride all together on the Burke Gilman Trail to the grocery store.  


Over the course of the day, she had some leg pain, jaw pain, upset stomach and dizziness.  All due to the chemo.  She had an episode this evening where she couldn't keep herself standing and that was scary for her.  Broke my heart.  She had a long day with no nap and needed to rest.  So she went to bed shortly after that.

Thur Dec 16

Madelyn has had a pretty good week.  Her spirits overall have been high.

She is seeing more of the ramifications of her treatment especially the steroids.  You will see in the pictures of her that she has extremely swelled cheeks and large belly.  This is a common "look" of children on steroids. This will start to go away in about two weeks when she tapers off this drug.  And will begin again in month 5.  Her hair is starting to fall out now too.

We are using the words Leukemia and cancer with her when describing why she is sick.  We explain that she has a sickness called Leukemia or cancer.  It is happening because her red blood cells and white blood cells are fighting.  The doctors are giving her "big" drugs to stop this fighting and to make her cells well again.  It is important that she trusts us and knows that we are not hiding things from her.  We want these words to not be a source of dread (as they are for us adults) but of definition.  We are talking with her openly of loosing her hair, that it is temporary and all the fun things we can do during this short period of time.  Cool wigs, crazy hats, head tatoos, etc. 

She will start the stage in therapy called Consolidation next week.  On the 23rd she has another big day of bone marrow biopsy, Lumbar Puncture for chemo, shots in each leg with chemo, and chemo via IV.  She will not be feeling good on Peter's Birthday, December 24th.  After Christmas we will have more of an idea of her new cocktail of drugs and what we will be dealing with for this four week period.  The purpose of the Consolidation period of therapy is to prevent the appearance of the leukemia in the central nervous system and to further decrease the number of leukemia cells.

She has had a fun week of visitors.  Ashely on Saturday.  It is always wonderful for all of us when Ashley comes.  Madelyn and Sophia love Ashley and Peter and I can feel completely at ease taking a little time to go to lunch.  They could care less when we walk out the door and that feels good.  It also is nice for us leaving Madelyn with someone that knows her so well.  She knows when Madelyn is not being Madelyn.  Sunday, Keira and her Mamma Katherine came to visit us.   Madelyn was not feeling well this day, but still had a good day.  Having Keira there made her happy.  Monday, Madelyn had Daddy all to her self as Phia and I went to Anacortes for the day.  She always loves Daddy days.

This was my first day home since November 23rd and it was hard.  Hard to be home without my family.  It was a reminder how much our life and priorities have changed in such a short period of time.  I wasn't able to see and do all I wanted, but it was good overall to be home.  I cried most of the day.  We miss home so much.  I had planned to go home that evening... but I was just too emotionally exhausted to drive home that night.  I spent the night at my parents.  I didn't feel like being home by myself. (By the way... Sophia made me listen to Keisha "Tick-Tock" the WHOLE ride back to Seattle the next morning.  And I am not exaggerating.  She wanted happy dancing music.  Nice wholesome stuff right?)

Tuesday, Grandma Terry and Grandpa Jim came to visit.  Wednesday, Grandma Harriet and Grandpa Urs came down in the afternoon and spent the night.  Peter and I were able to go out for dinner together that night and have a nice exercise walk.  Was VERY good for us.  It felt like the first time we were able to really talk about the previous three weeks.  The girls made gingerbread houses with Urs and Harriet.  Sophia ate most her hers.  Madelyn helped them cook dinner and has been actively helping with cooking all week.  She is really enjoying cooking and has pretty sophisticated tastes for a 4 year old!  Check out her grocery list.  She is the only child I know that ASKS to eat Brussel Sprouts.  

Beautiful handmade glass elephant for Madelyn sent by our friends and glass artists Shelley Muzylowski-Allen and Rik Allen. 

All our cards and well wishes. 

Handmade "Madelyn" book by the amazing Heather Leahy-Mack with pictures of the San Juan Montessori gang including story.

Madelyn's grocery list.  Please note Miss Tina... Madelyn wants you to see how well she is making her letters :)