Top 10 Things I Never Thought I'd Hear my 5-Year Old Say

You've asked for it, so here it is again (as originally posted on Facebook):

Top 10 Things I Never Thought I'd Hear my 5-Year Old Say

10.  "Mama, I need some oxycodone!"

9.  "Let's snuggle.  But don't touch me because it hurts my skin."

8.  Upon returning home after a family dinner out at a restaurant she requested, and eating half her dinner before vomiting it all over the floor, she said with a laugh, “Well, that didn’t work out very well!”

7.   Gloating to her sister, "I don't have to eat broccoli because I already get it through my feeding tube."

6.  (Overheard between M and her 3-year-old cousin): “Michaela, why don’t you have any hair?” “Oh, it’s just a side-effect of my medicine.” “What’s a side-effect?” “Um, I don’t really know, but it makes your hair fall out.”

5.  "Maybe Emily has a diaper rash because she doesn't have any platelets.  We should give her a transfusion."

4.  "Mommy, next summer can I go to cancer camp?"

3.  "We should go to a movie while my counts are up."

2.  "Mommy, spending the day with you at the hospital is not my idea of 'special mommy time'."

1.  "I wish I didn't have leukemia!"  For a girl that's had virtually no self-pity, this was refreshing to hear!

As you can see, we are coping as best we can with all the changes to our lives since January.  Humor, honesty and love are the biggest themes we live by these days.  Michaela's health is still very precarious and we just take each day as it comes.  God continues to bless our family with an incredible support system as well as the following summer updates:

First, we were able to take a fabulous 5-day vacation to the Oregon coast.  A few pictures follow below:

Second, we've moved into a new home that has made life so much easier.  We are now much closer to Childrens' Hospital and we have much more space to spread out.   For the first time since we married, Jon and I have a master bathroom, Madeline has her own room, and we even have a separate "school room".  Pictures to follow on a later post, but for now we are working on getting unpacked and getting our old house ready to put on the market.

We feel so blessed by the amount of help we received with this move.  Thank you to all who made it possible, from helping with packing weeks in advance to showing up on moving day to pack the van.  We could not have accomplished such an event in this season of Michaela's care without an amazing amount of support.  We are so grateful.

The 1,000 hats of Michaela Leslie Werner

Here is a showcase of only a small portion of Michaela's beautiful hat (and wig) collection.  She is so thrilled to have so many options from which to choose every day.  Thank you to everyone who helped to contribute!  As you can tell, she is NOT a fan of having her picture taken, but she has tolerated me well.

The Countdown Begins...

I just wanted to send out a quick update to let you know that things have been improving with Michaela. Last week she finally "made counts", which means that her white blood cell count is high enough to be out of isolation. She has also started an 8-week phase of treatment called "Interim Maintenance", which means that her counts should be stable and she should be feeling relatively well despite weekly chemo treatments. They do their best during this phase to cater the chemo treatments to her body so that she can stay strong through this phase. We began this phase on May 27, which marked the 2-year countdown to her end-of-treatment date. This means that Michaela will be completely done with her treatment on May 27, 2012! Somehow having a date makes the marathon easier to bear.

We are feeling encouraged that she is fighting this fight very well. There are still bumpy days where she does not feel good, but overall we are hoping the next two months will be better for her than what she has been through to date. Through the rest of the year we will be going through 8-week cycles: interim maintenance where she will be feeling relatively good, then delayed intensification where she will be hit hard with chemo drugs and not be feeling well, then interim maintenance again, and then delayed intensification again. After February, she should be in long-term maintenance until the end of her treatment.

This is a daily battle for us, but I am amazed at how many of you continue to pray for us, bring encouragement to us, and hold us close. It has been a long haul, and I have to say that we have the most wonderful friends and family anyone could hope for. You make the journey feel less lonely. For that, we are so grateful.

Another Hard Week

Hello friends and family! We find ourselves here at home on Sunday night grateful to be together as a family after a long, hard week. Michaela was hospitalized a week ago with severe dehydration and fatigue. Throughout the week at the hospital she had to endure the placement of a permanent feeding tube (which we will continue to maintain at home 24/7 because she is unable to eat), new IV antibiotics due to an unknown infection she developed in the hospital, and insulin injections to counter-act high blood-sugar levels as a result of some of her chemotherapy drugs. Other complications arose as her blood counts were unaccountably low and the doctors brought in new teams to try and solve problems that perplexed them. She was so strong this week, even as her parents faltered quite often. It was a tough week for us as Jon took the night shift in the hospital and Tiffany took the day shift with baby Emily and big sis Madeline, we had hard conversations with the doctors about her care, and we watched our sweet girl get sicker and sicker throughout the week.

Despite the challenges of the week, we have much to be thankful for. We are grateful to Cathy and Gary (Tiffany's mom and step-dad) for their constant care as they have moved into our home to help us. We are happy that Michaela is well enough to be home again in spite of unexpected complications. We feel closer as a family for having walked through a very scary week together and loved each other through it. We met new friends along the way, including Maddy -- Michaela's 6-year old hospital roommate with bone cancer who had to leave half her family in Alaska 6 months ago to come to Seattle for treatment. And we are certain beyond any doubt that God's light continues to shine in the darkness.

Thank you for your continued prayers for Michaela and our family! We are so grateful to you all.

Hair Confetti and Other Joys of Baldness

Whew. We made it through two weeks of intense combined radiation/chemotherapy and Michaela was amazing.  She ended up having minimal side effects, and her spirit remained strong through it all.  In fact, most of the time it was harder on her parents to watch what she was going through than it seemed to be for her to go through it.  She has been handling it all with joy, and she has taught us much about letting laughter bring healing.  The best example I can give is her recent "Hair Confetti party".


Over the past few weeks Michaela has slowly been losing her hair, but because she had so much of it to start with, it was really hard to tell.  All of a sudden yesterday it started coming out in clumps -- every time one of us ran our hand through her beautiful locks, we would end up with a huge chunk in our hands.  Well, last night Jon and I got out for our first date in a long time.  We came home to two giddy girls waiting to surprise us with Michaela's beautiful bald head.  Apparently, while we were gone, the girls had a hair confetti party where Michaela pulled out the rest of her hair (pulled is too strong a word for how easily it came out), and giggled hysterically.  They collected all the hair in Michaela's radiation mask that we brought home from the hospital as a keepsake.  


As we anticipated this side effect for many weeks, we have had lots of conversation around it.  Michaela decided a while ago that when she lost her hair, she also wanted daddy to lose his.  Her reasoning was that if daddy also went bald, everyone would be looking at him instead of her.  And so the time came today for Jon to make good on his promise.  We all trekked to the barber shop this morning for Jon to lose it all.  It was another chance for us to laugh hysterically while the barber shaved his head in long stripes and then eventually bald.


Now that three out of five Werners are bald (if you include Emily who only has baby fuzz right now), we have been learning about the benefits of going without hair:  (1) Bathing is much easier; (2) You stay cooler on hot days; and (3) You get to wear beautiful hats and other accessories!  Thanks to all of you who have contributed to Michaela's hat collection.  She has had so much fun trying on her different hats today and planning which ones to wear with certain outfits.  I can see now that this will provide endless accessory possibilities for her in the weeks and months to come.


We are continuing with chemotherapy through this phase of Consolidation.  The medicine is still pretty intense, and so Michaela's blood counts are down again, requiring her to be in isolation right now.  It seems to be harder for her this time around as she is feeling better and doesn't understand why she can't go to the park or spend time with friends.  Hopefully when this phase is through (in May), she will be able to be out and about more and return to her normal and very busy social life.  We are grateful for the continued prayers and love for our family.  Pictures of our recent adventures follow below:

 Mommy, Michaela and Emily on our last day of radiation at UW

Hair confetti party!

Before

After

And Baby Makes Three Little Women

Much like the March family of Little Women, our lives have been consumed with loving each other through some pretty tough times.  That's why when the newest member of our family arrived on March 3rd, we decided to give her a classic and beautiful first name (beginning with an "em" sound without being another "M" name) and honor this family in literature with her middle name: Emily March Werner.  Emily joined our family on March 3, 2010, three weeks early.  She is small (6 pounds and 2 ounces) but perfect in every way.  Her two big sisters are ecstatic that she is here, and she has particularly brought much joy to Michaela, who relishes her new role.  We could not have handpicked a better time for Emily to come.  Last week when she arrived Michaela had a scheduled week off chemo while we waited for her blood counts to come up high enough to start more intense chemo and radiation this coming week.  We saw glimpses of the old Michaela this week, and her pain level was quite low.  We heard giggling, saw skipping, and celebrated her 5th birthday with a rainbow theme.  Her hair has started falling out, which she has accepted with humor ... leaving sprinkles of "hair confetti" everywhere and "teaching her hair how to swim" in the bathtub.


The coming two weeks will be filled with difficult cancer treatments -- each day Michaela will go to two different hospitals, one for radiation and one for her chemotherapy.  These combined treatments will make her very nauseous, lacking in appetite, and continue to make her lose her hair.  We are grateful for Emily's presence through it all, as she serves as a happy distraction for Michaela who loves to hold and care for her more than we ever imagined.  Madeline has also been a wonderful help to Michaela, as they have enjoyed snuggling up and watching movies on Michaela's new portable DVD player and playing games on Madeline's new i-touch.  Jon and I continue to be comforted by the blessing of family and friends who have cared for us in so many ways.  Thank you for being a tangible reminder of God's presence through this time.  Pictures of our new baby girl follow below:

One of Michaela's steroid meds gave her a swollen tummy and cheeks.  So she and mama had matching "bumps" in the days before Emily was born.

We fell in love with her as soon as we saw her.  

Emily March Werner, born 3/3/10 at 5:00 am, weighing in at 6 pounds, 2 ounces.

Perfect in every way

Big sister Madeline having a chat with Emily

Big sister Michaela snuggling with Emily

Michaela's Valentine's Day -- back in the hospital

 
Well, we were able to enjoy being home from the hospital for a week, but a bacterial infection landed Michaela back at Children's Hospital.  Because she has no immune system right now, any form of infection or virus can be fatal.  So when she spiked a fever above 101 on Valentine's Day, we rushed to the hospital where she was immediately admitted.  The doctors have determined that Michaela has a Strep G infection in her blood, and will need constant IV antibiotics over the next 2 weeks.  Beyond that, they will only allow us to go home when her white blood cell count starts to rise.  Unfortunately, the chemotherapy she receives keeps her white blood cells from growing, so we may be here for quite a long haul. 


We've been so blessed by help from close family and friends who have pitched in to deliver us meals (even in the hospital!) and special gifts and treats for the girls, spend time with Madeline while Jon tries to get to work for a few hours each day and I stay with Michaela in the hospital, and one kind soul even covered our front yard with helium balloons for Valentines Day (picture above).  We are beyond grateful to the folks who are showering us with God's love during this time.  Children's Hospital has now become somewhat of a second home for us.  We are getting to know some of the other families in the cancer ward (some with stories so heartbreaking I find myself standing at the shared refrigerator crying with them).  We are getting to know the regular nurses well.  And we are discovering the best hours to eat in the cafeteria (1-4 a.m.). 


Michaela is doing well considering all that is happening in her little body.  She continues to be weak and exhausted, but she has been very sweet with the nurses and doctors who constantly come by to bother her.  She can't have visitors beyond immediate family, but one of her parents is always with her through the night and day.   I am amazed at her fighting spirit, and she has become my hero.  Big Sis Madeline has been a wonderful support for her sister, and has had a very positive attitude about the change in our family life.  She's enjoying a lot more play dates these days and a lot less school time (other than the anatomy study the whole family is engaged in as we learn more about leukemia).  Baby Werner is doing well through all of this and is due to be born sometime in mid-March.  We are hoping we will be home from the hospital by then, but if not we are getting our contingency plans in place.  


We are relying on God's strength to get through these weeks at the hospital.  We know this is the best place for Michaela, as she can be constantly monitored and cared for by the amazing doctors here.  But the days are long and difficult and we struggle as a family to make sense of all of this.  Nevertheless, we trust in God's faithfulness even through the fire.  For how can we claim that He is good only in times of plenty?  No, He is good ALL the time.  As the song says: 

"Blessed be Your name 
When the sun's shining down on me  
When the world's 'all as it should be'  
Blessed be Your name!  

Blessed be Your name  
On the road marked with suffering 
Though there's pain in the offering 
Blessed be Your name!"

Michaela's fight

On January 30, 2010, our latest family adventure began when four-year-old Michaela Leslie Werner was diagnosed with acute lymphoblastic leukemia ("ALL").  We were shocked and grieved at this sudden diagnosis, but trusted that God would work through the amazing doctors and staff at Seattle Children's Hospital and bring healing and restoration to her body.  She was immediately admitted to the hospital, where she underwent multiple procedures, received several transfusions, and began intense chemotherapy.  We stayed by her side day and night for a week.  The first victory came after that first week when we learned that the cancerous cells in her blood had gone from 120,000 to zero, making it possible for us to return home February 6 and continue her chemotherapy through the outpatient clinic.  At this point, her immune system is completely depleted as the treatment has also killed her white blood cells, which means that she is at an extremely high risk of contracting illness.  So although we are home, and happy to be here, Michaela is in isolation and not able to continue with her normal activities of playing at the park, going to ballet and drama classes and having playdates with friends.  This isolation is necessary only for this phase of treatment while her blood counts are so low.  If she gets sick, we will automatically be back in the hopsital and her treatment may be compromised.  Although she is weak, tired, and pale, her spirit remains strong and sweet. 

As we look to the weeks, months and years ahead with this illness, we are completely reliant on God's strength to get through each day.  We have faith that He will make Michaela well again, but the sheer magnitude of the journey can be discouraging.  Please keep our family in your prayers.  Pray for healing and protection for Michaela, strength and hope for our family, and ultimate victory over this disease. We have been blown away by the encouragement and support we have received from so many.  Thank you for loving our family so well.

For those who are interested in the treatment phases and prognosis, read on:  Although Michaela's blast count (cancer cells in her blood) is at zero, the disease remains in her bone marrow as well as trace amounts in her spinal fluid.  Our goal for this first phase of treatment ("Induction") is complete remission.  Induction is 5 weeks long, and involves a combination of chemotherapy drugs which we administer both at home orally and by weekly visits to the outpatient clinic.  There, the staff directly inserts medicine into her portacath -- an IV implanted directly into a large vein in her chest -- and occassionally into her spinal fluid through a spinal tap.  Thankfully, Michaela has been a trouper through all of this, even though the side effects of the medicine can be hard. Over the next few weeks, she will probably lose her hair, become nauseated and sick, and feel constantly tired and moody.  It's a lot for anyone to endure, but very difficult to watch your precious child go through it.  If we reach the end of Induction and the cancer is gone, we will continue on to the second phase of treatment ("Consolidation"), an 8-week period of receiving a different combination of chemotherapy drugs with the goal of keeping the cancer from returning.  Beyond these first 3 months, there are several other phases of treatment which will ultimately take over 2 years to complete.  Michaela's team of doctors have told us that overall survival rates for kids at her age who have ALL are 90 percent.  We are VERY encouraged by this.  More pictures from the hospital follow below:

Craft time!

Snuggling with Big Sis Madeline

Sharing fish crackers with daddy

Painting nails with mommy

Merry Christmas!

Here's a quick reflection of the joy we've experienced this Christmas season.  As we've celebrated the light of Christ in our world, we've continued many annual traditions that are near and dear to our family.  In the above picture we are at one of our favorite Christmas spots -- The Lights of Christmas at Warm Beach.  The lights were amazing, and the girls enjoyed the petting zoo, pony rides, storytelling, and of course, the talking Christmas Tree.  Our favorite is the life-size nativity scene in the middle of the camp with the Hallelujah chorus playing.  

Another favorite activity is afternoon tea at the Queen Mary in Seattle.  This year I dined with two princesses (complete with tiaras) and my mom.  It is delightful to be there this time of year ... the food is amazing and the holiday decorations abound.  

Yet another family favorite is an evening downtown, visiting the carousel and riding a horse-drawn carriage through the Seattle, looking its Christmas best.  We do this every year with the same friends and it has become something to which we all look forward.

Other activities this year included visiting the Governor's Mansion in Olympia as it was all dressed up for the holidays, taking the monorail into downtown to see the Gingerbread villages at the Sheraton, going to the Nutcracker ballet, a day of ski lessons on the mountain for the kids and dad, and participating in our church Christmas concert.  We still hope to go ice skating at Seattle Center, make gingerbread houses, and visit Candy Cane Lane.  

This has been a truly blessed holiday season for our family.  As we await the arrival of our new little one, we also sit in the anticipation of advent.  Our hope is that we will catch a glimpse of God With Us this season.  

From the Lips of Children

Sometimes my kids really blow me away.   Mostly it happens when I'm least expecting it and I get to see a glimpse of their beautiful hearts.  I got to experience this thrill last week with Madeline and her friend Isaac.  They were at our house diligently working on a secret craft project.  Turns out, they had created several beautiful colorful drawings, and put prices on the top.  (i.e., "Winter Scene, $1.00", etc.)  They were so proud to show off their gallery and quickly determined that they wanted to take their pictures to the local park to sell them.  Isaac's mom, Cynthia, and I asked questions about what they were hoping to accomplish by selling their creations.  After deliberating for a few moments, our kids returned with their plan -- they wanted to earn money to give to New Horizons, a ministry to homeless youth that had recently been robbed.  They wanted to help replace some of the bus tickets and other goods that had been stolen.  I loved the idea, but remained cautious.  I couldn't imagine that anyone at the park would actually respond to them as they expected.  Nevertheless, Cynthia and I decided to make it a learning moment, and we took them to the park.  We were clear that this was their project, so they would have to talk to their customers and explain the vision.  


Well, those kids blew my socks off.  They boldly walked up to every parent at the park and explained the situation at New Horizons, stated that they were earning money to give to the ministry, and politely asked if he or she would be interested in buying an original piece of art to contribute.  Watching the parents (and sometimes their kids) respond brought tears to my eyes.  Everyone at the park was touched in some way by this small gesture.  People were emptying pockets, running home for spare change, and lighting up at the opportunity to give.  Madeline and Isaac ended up selling all their art work for over $10.00.  They inspired us all that day to bring the love of Christ into unexpected places, and to make a difference right where we are.  My daughter was supposed to learn something from this experience, but in the end I was the one that received the teaching.  

"When's the next piano competition, mom?"

This weekend Madeline and I took an overnight trip to Ellensburg so that she could compete in a piano Sonatina competition.  It was great fun to have some special one-on-one time with my eldest, and a road trip suits us both very well.  We spent the time in the car chatting, singing, and listening to music.  We spent the time in the hotel snuggling together in the  big king-sized bed.  And we spent the morning awaiting her turn to play and the results of her performance.  Her piano teacher, Marissa, made the trip to practice with Madeline and five other students who were participating, all at various levels.  Madeline is six and was competing in Level I.  I watched this sweet child as nervousness gave way to confidence after she spent an hour practicing with Marissa.  Her eyes blazed as the music entered her heart until she finally said, "Mom, I can't wait to perform it!"


She performed for a judge behind closed doors (neither mommy nor Marissa were allowed in the room), and she walked out beaming a huge smile, very proud that the months of hard work and daily practicing had paid off.  When the results were announced, Madeline had achieved 3rd place, granting her a medal that she has worn around her neck with honor every day since.  During the 2-hour drive home that afternoon she said,  "When's the next piano competition, mom?  I loved it!  Next time I want to do even better!"  My assurances of her worth in my eyes and my insistence that it didn't matter what place she attained as long as she was proud of herself all fell on deaf ears.  She clearly set a goal for herself that day, and has been on cloud 9 at the thought of accomplishing it ever since.  This is when being a parent is such a gift ... to watch the passion swell up inside your child and encourage her to follow that dream.  It's not always as straight-forward, and I'm sure Madeline's life and passions will take a windy road, but I'm celebrating her tenacity today.  And, I am so proud.

For the Love of Learning

Our Week in Phoenicia

This week we found ourselves on the shores of a new ancient land.  By way of background, we began the our homeschool history journey a few months ago in the most ancient of places ... starting out with the first nomadic peoples found in Mesopotamia, we have now traveled through ancient China, India, Africa, and finally Egypt.  We left Egypt with the Israelites and studied their move into Canaan.  Now here we are, leaping into the land of the little-known neighbors to the north of Israel.  The Phoenicians were famous for their glass work and purple dye, which was created from smelly sea snails and used to make rich linens fit for kings in neighboring countries.  They were a seafairing people, who ultimately may have been the first people group to have circumnavigated Africa. 

Our week was filled with exciting adventures as we read Virgil's legend about Queen Dido leaving the shores of Phoenicia and sailing to northern Africa where she established a new city called Carthage.  There, she met Aeneas who sadly broke her heart and left her to conquer Rome.  My youngest daugther (the "feeler") couldn't get enough of this story -- the triumph and the tragedy seem to excite her very bones.  My eldest daughter (the "thinker") couldn't wait to be done with the story, it being a challenge for her to separate the literal from the figurative.  She was instead excited by the tangible -- the geography and the archeology.

Ah, the joys of homeschooling.  Where one child is fascinated, the other is bored.  However, so far we have found enough ways to make each week of history study fun enough for both, in their own way.  This is what I love about it.  We have utilized so many different tools in studying history that there is plenty of love for learning to go around.  We finished the week with a craft project -- making our own dye with food coloring, we dyed penne noodles and made them into jewelry (as modeled above).  Although they enjoyed it immensely, both girls were adament they would not have wanted to be children in Phoenicia, working hard in the family business of making purple dye.  At least that's one thing upon which both can agree!

It's a Girl!

Yes, we are pleased to announce that another girl will be joining our family in March!  The ultrasound yesterday showed a healthy baby girl, due March 24.  Madeline and Michaela are over the moon about having a baby sister in the house, and they are the sweetest caretakers for a mommy who is been more tired than usual.  Jon jokes that baby sister will have three mothers to care for her.  Although we may soon need another bathroom, daughters are a blessing, and we feel so grateful to have a house full of them. 

Some very well-meaning people ask Jon occassionally how he feels about being the only male in the house.  Does he want a son?  Oh, how I wish those folks could see the complete adoration he receives in this house.  He is the recipient of daily buttefly kisses and bear hugs. He dances with pricesses in their royal garb who can't imagine dancing with any other prince but him.  In our humble castle, he is the strongest, smartest, funniest guy on earth.  Who wouldn't want to come home from a long day of slaying dragons to be met with such attention?  He is a lucky man indeed.

Fall fun

Favorite Fall Adventures

The Farm.  This weekend we went to one of our favorite fall spots. "The Farm" is just north of Seattle and provides impressive options for fun outdoor activities.  We saw farm animals, including a trained 3 Little Pigs show.  We found our way through a hay maze, exiting out through a gigantic slide.  We wheelbarrowed through several acres of pumpkin patches, finally arriving on the two most perfect pumpkins (see picture above).  And we carefully hiked our way from Spokane to the Puget Sound through an enormous corn maze in the shape of Washington state.  It was great fun for all, and this year the weather was gorgeous.

Leaf Jumping.  Now that the leaves have turned to gold and crimson they are no longer happy to just hang from the trees.  Instead they slowly float down to the ground with the hopes of being thrown in the air by two giddy girls who love to adorn their hair and clothes with them after romping and rolling for hours.  To glace at the faces of the girls, who can blame the leaves for wanting to partake?

Fall Treats.  Let's face it.  It's all about the pie -- pumpkin pie and apple pie being our family favorites.  Also our famous cinnamon baked pumpkin seeds are worth mentioning.  Fall also brings with it the desire for homemade soups.  So far this year we have made potato barley stew, fall veggie with tortellini soup, and clam chowder.  Apple cider with cinnamon sticks completes the list.

Our Story

As is the case with most of my endeavors, I'm several years too late. I'm finally adding "Blogger" to my resume just when it's becoming out of fashion. Nevertheless, since I see no future for myself in tweeting, I've decided I will feebly attempt to join ranks with those who have all sorts of witty things to say about their lives by commencing our first family blog.

First, a word about our family: We LOVE adventure. Ours began 14 years ago when Jonathan and Tiffany tied the knot at the tender age of 22. Seven years, five homes and two graduate degrees later (hers in law, his in business administration), we gave birth to our first amazing gift from God, Madeline. Two years later our second amazing gift, Michaela, followed. Our girls are now six and four. Hopefully in the coming months and years you will come to see that adventure is something we find in almost everything we do. From traveling to beautiful places as a family to reading about wonderful imaginary worlds, we tend to be restless for the bigger story behind it all. God has richly blessed us with a faith that makes our journey through life part of His bigger story.

And so, dear friends and family, we've decided to let you in on the magic of the story as you walk the different legs of the journey by our side. Thanks so much for joining us.