A Quick Update...

Billy received his pathology results from last week's surgery biopsies. The diagnosis is eosinophilic esophagitis with the primary cause being uncontrolled reflux. Essentially his esophagus becomes irritated to the point it becomes rigid and food becomes trapped. His doctor has prescribed a new medication and he will see him next week to assess further steps and dilation surgery- if needed.

We are still waiting for Julia's repeat scans at the the hospital this Tuesday. Her urologist has called multiple times checking on her which is a little unnerving. I am glad they are on top of the situation but there level of concern makes me nervous and wanting to ask them questions. It is frustrating to have to put that part of her care on hold for right now, but it is what we have to do.

The kids have been busy the past week with co-op classes, plays, festivals, art classes, flag football, lacrosse, and play dates. Last week at CBS Bible study, Julia's teacher did an activity with them where they listed all the attributes of God they could come up with as a class. Tonight as I was putting her to bed she said, "Mommy, today during communion I prayed all the names about God that I could remember from that list we made." I am so thankful for the people God has placed in my children's lives and all that they are pouring into them.

Julia and I just started a new bedtime devotional called, For a Time Such as This by Angie Smith. She has really gotten into the stories and the way they are written and discussed. Part of each section is to personalize the prayers and read them to your daughter. Tonight's were so very relevant to my desires for her and her heart...

"Lord, I pray that Julia lifts up her prayers to You, let her be reminded of the way You care for her and take her burdens on as Yours. Help her to know that You can work through her, even when she feels weak or fearful, and help her understand the power of trust. Give me words to teach her well and strengthen my trust in You so that I am a living example of believing in You, even when it seems impossible to me. Give me hope where I need it the most and the tools to pass along that hope to Julia in a way that makes You more real.

Lord, help Julia to sense Your presence in the times that she feels alone. Remind her in those moments that Your watchful eye is upon her and that she can call out to You from whatever desert she feels lost in. Speak courage and hope to her when she worries that she has been forgotten. Your Word declares this: 'Be strong and courageous; don't be terrified or afraid of them. For it is the Lord your God who goes with you; He will not leave you or forsake you.' May I walk in the light of this promise and teach Julia to as well."

While we wait...

It has been an interesting week since Julia's scan day last Monday. God has given us tremendous peace among all the questions. One of the first lessons you learn in the cancer world is to keep your head where your feet are. Right now for us that is the land of lots of questions and not a lot of answers. Our first task was to contact urology to find out what Dr. Hodges wanted to do about her bladder issues and abnormal urine. After many calls back and forth he decided to start her on an antibiotic. He has several tests and procedures he wants to do, but he is taking the backseat to oncology right now and won't start until her next scans are done.

Today we had her well-check at the pediatrician's office. We love our doctor and it has been such a journey to get to this place. After 9 different pediatricians in 4 different practices and some really horrible experiences over the past 11 years- we are so blessed with the doctor we have been sent. (And he was trained at Brenners which is bonus in our book!) Today just reinforced all the reasons why he is such a good fit for us. It is not an easy job to take care of a child with multiple medical issues and 11 different specialists. He does an amazing job coordinating her care and filling in the blanks where needed. Her last doctor used to start every appointment telling me to start at the beginning and fill him in up to the current day. Whenever he prescribed medications he would ask me if it was something she could have. I appreciate his asking, but I need someone who keeps up and knows what to do next. Her doc also does a great job filling in all the blanks. When you see so many specialists sometimes the normal development concerns get ignored. Today he spent an hour and a half with us. I am so touched by his skill, communication, expertise, compassion, and understanding. Thanking God for you today, Dr. C!

While we wait for lots of other answers, her pediatrician is going to be able to get her into another neurologist in 3 weeks instead of the 6 month wait at Brenners. As much as he wants to keep all her specialists at one hospital, he doesn't want her to have to suffer that much longer without consistent pain relief. She seems to be having cluster migraines and we need some medication options.

They also rechecked her urine to make sure the medicine had cleared up the infection. Unfortunately it is actually worse instead of better, but thankfully we did an additional test last week to be sent for culture so we at least know what we are dealing with. Please pray that this new medicine does the trick. We really need to protect her urinary health and that single kidney.

We have been keeping ourselves busy in the mean time. Last Thursday was our much-anticipated yearly trip to the Dixie Classic Fair. This has become a tradition for us after her annual scans. Unfortunately, we weren't celebrating the same news as usual, but we were so thankful for a beautiful day and fun time together.

 

 

As we were walking around that day, Julia looked at me and said, "Mom, I didn't get the NED (No Evidence of Disease=clear scans) we were hoping for did I?" It broke my heart to know her heart was pondering those questions. I told her we didn't, but we also didn't get any answers- just lots of new questions. She started to cry and said, "Mom, I don't want to have cancer again." My heart broke in a million pieces for her. I know this is a burden she has to carry for the rest of her life. Part of her life off treatment is a regular schedule of screenings and tests indefinitely. She will always have annual scans and things like mammograms and colonoscopies start at age 25 for these kids. As we move forward we hope to better equip her with the tools she needs to face the unknowns, the questions, the scares, the emotions, and even the feelings of others. As we've said before cancer hands you a "goodie bag" on the way out and many of the contents are quite a handful. Pray that we have the discernment and wisdom to know when to talk, when to be quiet, and what we should say to her. 

We did find a fun way to get out some big feelings people were having. Demolition was just what the doctor ordered. Our old deck was falling apart and becoming unsafe, so the kids and some sledgehammers turned it into a pile of firewood. A fun way to see their strength at work!

 

As we sat down to eat dinner Sunday night we had no idea what lay ahead. As Billy was eating his food became lodged in his esophagus. He tried unsuccessfully for an hour to dislodge it. Then he headed to the ER. They did everything they could for another 3 hours and then took him by ambulance to another hospital for emergency surgery during the night. Thankfully the procedure was successful and everything went well. He was released a few hours later. The doctor took pictures and biopsies and we are awaiting pathology reports to determine what condition is causing this and what the next steps are going to be. After a day of recovery yesterday, he seems to be much better just dealing with some discomfort and a very limited prescribed diet.

So apparently our waiting has just grown a little. We are thankful for the peace God has given us in the unknowns. Whatever is ahead is already determined. We know worry carries no weight, but just saps our strength. We trust that God will continue to carry us whatever we are called to face. We are so thankful for our friends who have reached out to help and walk beside us through this in a tangible way. We decided to let Julia pick which day we go back for her follow up scans. It was an opportunity to give her some control and choice in all of this (she announced today that she's tired of doctor's just from this past week). She has picked Tuesday, October 21 because Ms. Betsey will be there to do art, Ms. Stacy is working, and the pet therapy dogs visit that day.

We've been spending a lot of time listening to our favorite music. Julia's repeated requests are Travis Cotterell's new CD- I'm Living Proof. Putting the song 'Every Praise' on repeat is an awesome reminder of how we want to live our lives. And 'Awesome' is great when for those moments you need to preach real truth to yourself. Watching her belt it out with all her might is a beautiful thing! I need a dashboard cam :) She also loves Moriah Peters, 'You Carry Me'. When she asked me to get the song for her I had yet to realize how much it tells her story...

Feels like it's been miles and miles
Feels like it's an uphill climb
Sometimes I get weary on the way
But when I look back at where I've been
When I look back, I'm sure of it
I was right there in Your arms and I can say

Every moment of my life
God, You never left my side
Every valley, every storm
You were there, You were there
I don't need to know what's next
You'll be with me every step
Through it all, through it all
I can see You carry me

There are days I wonder if
You can fix the mess I'm in
Times when nothing seems
To go the way it should
But then I look back on every season
I can find there's ten thousand reasons
To trust that You can work all things for good

Through the wind and waves
Through my worst mistakes
Through the times I thought I walked alone
You were holding me
You were whispering
I will never leave you on your own.

Scan Day- Take 12... 2014

Wow! I have not posted on here in a year! It feels like forever! In all honestly this post is not the way I wanted to make a comeback. I look at those sweet little faces at the top of the blog and I can't believe how much my babies have grown. But I also remember all too real the trial we were facing in our lives at that time.

Today was Scan Day for Julia. Every October we spend the day at Brenners assessing all her systems making sure everything's a go and there's no cancer cells lurking and multiplying. Today was one of those benchmark finish lines. She has been off treatment now for 5 years and an NED (no evidence of disease) result means she is promoted to the Survivors Clinic with Dr. Castellino (our Hyundai Hope on Wheels grant recipient doctor) where she will receive long term care for the rest of her life. Granted the annual checkups continue, but this is the point when your chances of relapse of your original cancer drop off and they start monitoring for secondary cancers and other side effects. I know, it's an awkward "woo-hoo", but in the solid tumor cancer world it means you earn the label of "survivor" and you check off another victory box. Woo-hoo!

 

We were SO ready to do that. 

The scanxiety has been less than in past years and Julia was prepared for the day and ready to be poked, prodded, scanned, and questioned. We were all keeping busy talking about survivor t-shirts, celebratory trips to the fair, dinner plans, and a fun vacation getaway.

We started with her x-rays and the orders were actually in the system for the first time in 5 years! Good sign. They did all her lung views, then the scoliosis series. She developed this last year from the abdominal radiation she received. (Fortunately the radiation oncologists learned to evenly nuke both sides of the spine because their cancer survivors were growing up lop-sided, but it's not a perfect science.) Her spinal curve is still present, but stable. Woo-hoo!

 

Then we had her chest and abdomen ultrasound. It was great to see Kalista again, the tech who has been with us through this entire process and goes out of her way to love on Julia. The good news... her kidney they removed is still gone and nothing has grown in its place! Woo-hoo! Her lone right kidney is large and in charge and working like a boss. Woo-hoo! All the other organs, arteries, etc looked good until we got down to her bladder. The bladder wall usually looks thin like an egg shell. Hers was more like at a round doughnut. Julia has had diffuse bladder thickening in the past, but that was 4 years ago before we knew her colon wasn't functioning. It resolved on its own after her cecostomy surgery and new daily meds regimen. Her urologist, Dr. Hodges, released her over a year ago after her assortment of urology issues all cleared up. Woo-hoo!  Kalista took all the imaging in to "the wizards" in the dark room in radiology. They agreed that the bladder was suspicious and also full of debris. Lovely. Ugh.

 

We went upstairs to wait for her labs to be drawn. She handles it like an old pro and Pat is awesome at her job! She filled 4 tubes today for oncology and for GI, who ordered a battery of tests to try and get to the bottom of her chronic stomach pain. We will follow up with Dr. Safta (GI) on November 4th. We have kicked Dr. Glock to the curb and still long for Dr. Fortunato, but aren't willing to make the trek to Denver like his other patients are doing. There is still not a good GI motility doc at our hospital or any of our neighboring ones.

Then we had her oncology physical. They were happy with her growth and development. (and we love Nurse Rhonda!)

 

They are concerned about her headaches. She has persistent pain in the front right side of her head going on 6 months now. It really stinks when the only pain meds you can take are tylenol and narcotics (because of her single kidney). I give her vicodin when it gets really bad but don't want her taking it every day. They are referring her to neurology (about a 6 month wait) and starting her on caffeine and a headache diary.

Then it came to results. Her labs showed her white blood count is too low. This was a problem after treatment, but it had finally rebounded. She also has low neutrophils and they have no idea why. They are going to wait and retest. Her chest x-ray showed 2 spots on her lungs. This is the second time I have had to hear them utter these words and it is the same every time. Your heart just stops for a minute and it all feels very surreal and in slow motion. "The wizards" couldn't determine what the spots were and want to repeat the test in two weeks. They said it is either blood vessels, asymptomatic infection, or cancer. So for now we just have to wait it out...

The kids heard everything that was said, but certain things are just implied, like "possible relapsed cancer", and not said explicitly. I don't think they have connected the dots on all the facts and I am happy to leave it at that for the next few weeks. They know that is an option at every scan, but aren't pushing for answers at the moment.

We were still waiting for her urinalysis results six hours after sending it to the lab. Nurse Nancy called to rattle some chains and the lab technician said she had the urine but didn't know what to do with it?!? Nancy brilliantly suggested urinalysis (duh!) and testing finally commenced. Unfortunately the results came back with "cloudy, moderate bacteria, and high leukocytes"- but not a classic UTI. So the questions continue. All the results have been sent over to her urologist, Dr. Hodges and we will await his verdict on the urinary side. He is a brilliant, world-renown doctor who I trust completely.

As far as the rest we are just left to wait it out. The cancer world has a way of raining all over your party whenever it feels like it. We have lived that out for years. It wasn't so much a shock today as another "is this for real?" It's kind of like the surprise party without the guest of honor or the anticipated school promotion with a summer school slip instead. This is not where we hoped we would be, but it is where God has us right now. As much as cancer rains all over our parades in this life, cancer kids have found a million ways to dance in the rain.

 

After our cafeteria feast- my kids can put a hurtin' on some cafeteria food- we stopped in the tower next door to visit our dear friend Beth as she battles AML and awaits a bone marrow match. It just hits you sometimes how crazy our life can get and how much everything you know as normal can change in an instant. As I held my bag of lab printouts, Beth with her newly bald and beautiful head shared her latest reports, we talked about life changes and new schedules and kids sports and family, and our kiddos played the Angry Birds board game launching pigs and birds across the room. This is just life for all of us.

As we drove home from the hospital the kids started to spontaneously sing, "My Savior loves, My Savior lives, My Savior's always there for me. My God He was, My God He is, My God is always gonna be!" And that is where we live. We have experienced too much suffering, gone through too many trials, and buried too many little friends to put our hope in this world. We know our HOPE is on the other side and lasts forever no matter what happens here and that is the only place we can find peace.

Thank you all for your love, prayers, and support over the years and now. Every day we have is a precious gift of grace that none of us have earned or deserve. We thank God for each one and pray He opens our eyes to all the blessings He puts in every day- even the hardest ones. May God richly bless you and each of your families!

Our Favorite Family Read Alouds

As the countless bookshelves and over-stuffed library bags in our home will tell you... our family LOVES books. We have always cherished the time we get to spend listening to a book read aloud together. There is nothing quite like the shared adventures we take in our minds through the book treasures we read. We have had so many favorites over the years, but I find many people asking what chapter books we have loved. (In choosing books, I have pretty strict standards for appropriateness. One of the great things about reading aloud is the ability to edit as you go. I often change a word here or there (for example- we don't say "stupid") or skip unnecessary lines that refer to smoking- a widely accepted habit a century ago).

Here is a list of some of our favorites. (Just as a reference I have a 7yr old daughter and a 10yr old son. This particular list goes back to when they were around 5yrs old.) They are in no particular order, well except for the first one- our top favorite! Seriously good! Grab your Kindle, download it today, and curl up and read to your kids! Enjoy and happy reading!!

GROWLY: BEGIN (Book 1) and WIDEWATER (Book 2)

by Philip and Erin Ulrich

These are our new favorite books! They are the perfect mix of intriguing and well-developed characters, friendships, adventure, imagination, suspense, and great storytelling. They have captivated everyone in our family and appeal to boys and girls of all ages and interests. We talk about these characters and the unfolding story lines all the time and cannot wait for more books in the series! So thankful for these authors and their incredible contribution to wholesome, quality family literature.

SARAH, PLAIN and TALL series 

(SKYLARK, CALEB'S STORY, MORE PERFECT THAN THE MOON, 

and GRANDFATHER'S DANCE) 

by Patricia Maclachlan

A classic well-loved book most everyone has read. It's an easy read in simple speak telling of life during the Dust Bowl from the perspective of the children in the family. Most people know the first few but do not know there are more books to the story.

TEDDY'S BUTTON

This is the first book we read from the acclaimed Lamplighter Ministries. These books are from a variety of authors and genres and are designed to disciple and build character in children and adults of all ages. This was our first selection from dozens available. It is a book from the 1800s and sometimes the writing style was challenging, but my elementary age children were captivated by the story, moved by the plot, and touched by the Gospel message. It was a book none of us will forget and prompted many heartfelt conversations. We can't wait to read more from this publishing house! Next up for us is The Boy Who Never Lost a Chance.

FIVE LITTLE PEPPERS series

by Margaret Sidney

My children loved these tales of the five little Pepper children and their poor mother who struggled to provide for them. Their lives are simple and hard, yet full of love and fun. There are many books in their series and they are often free for Kindle or offered as an inexpensive set.  

MR. POPPER'S PENGUINS

by Richard Atwater

A fun tale of a crate of penguins delivered into suburbia. Now a movie, but first a classic book and a fun read.

BETSY-TACY series 

(BETSY-TACY, BETSY TACY and TIB, 

BETSY and TACY GO OVER the BIG HILL, 

BETSY and TACY GO DOWNTOWN) 

by Maud Hart Lovelace

Classic tales of the simple life of young neighbor girls growing up in the early 1900s. These are well-loved books that have been read and reread by so many. We all enjoyed the first 4 books in the series. There are more but the plots become more mature as the characters become teenagers so we will save those for the future. They sell a treasury book that includes all 4 of these books and extras about the author's life.

ALL OF A KIND FAMILY 

by Sydney Taylor

Another classic family story about a family full of girls growing up Jewish in NYC at the turn of the century.

FROM the MIXED-UP FILES of MRS. BASIL E. FRANKWEILER

by E.L. Koningsburg

This was one of my very favorite books read aloud to me by my 4th grade teacher. I reread it at least 6 times myself. It tells of the adventures of 2 children who get locked in the Met on a school field trip. AN award winner, a classic, and a solid piece of literature. 

IN the YEAR of the BOAR and JACKIE ROBINSON 

by Bette Bao Lord

Another favorite from my grade school days. Shirley Temple Wong is a young girl in 1947 who moved from China to Brooklyn. This book humorously and touchingly explores what it is like to be a part of the American melting pot from the eyes of a child.

MRS. PIGGLE WIGGLE series 

by Betty Macdonald

An all time favorite series from my childhood and my days as a teacher. Mrs. Piggle Wiggle has creative and fun solutions for all the neighborhood parents to address their children's troublesome behavior. Love the mix of imagination, good manners, natural consequences, fun, and fantasy. These will be requested over and over.

DR. DOOLITTLE

As a mother of an animal-lover I knew we would read this book at some point. I actually picked it up at Barnes&Noble from their Classic Starts Collection. I know some people are adamant about reading books in their original form, but we have read several of these and love them. To quote the seller they are "expertly retold to appeal to 2nd to 4th graders as well as older reluctant readers". I thought they were a great way to expose classics at a young age without trudging through thick books, tough vocabulary, and unfamiliar sentence construction. We have since added several more to our collection.

THE TROLLEY CAR FAMILY 

by Eleanor Clymer

I have a copy that actually belonged to my mother. This was one of the first books I read aloud when my kids were preschoolers. It was a book we didn't want to end because we knew we would miss the characters and wanted to hear more about their lives.

GOONEY BIRD GREENE series

by Lois Lowry

As the new student in second grade, Gooney Bird's classmates are attracted to her unique style and personality. The book is a series of stories she shares with her class- each one absolutely true! I loved this book because in the process of sharing her tales, Gooney Bird teaches about the art and skill of storytelling in a format very relevant to children. I wish I had found this gem of a book sooner! Will definitely read more of the series. 

EVANGELINE MUDD and the GOLDEN-HAIRED APES of the IKKINASTI JUNGLE 

by David Eliot

An unusual tale about a young girl raised by primatologist parents. After a unique childhood, her parents disappear and Evangeline sets out to rescue them. This book is full of crazy and well-developed characters a bit of absurdity, humor, and adventure all stirred into one. This book now has a sequel with a new ecological adventure.

THE ELEVATOR FAMILY

by Douglas Evans

A playful book about a family that lives in an elevator for 3 days. A great silly story to prompt some fun "what if...?" conversations with your kids.There are lots of free activities and lesson plans available online, too.

MY FATHER'S DRAGON

by Ruth Gannett

A whimsical tale about a boy who runs away to Wild Island to rescue a baby dragon. Written in the nonsensical logic of a child and full of fun, heroic escapades and lots of artwork. This is the first book of the trilogy.

CRICKET in TIMES SQUARE

A timeless classic about Chester, the country cricket who ends up on the subway headed to Times Square. A tale of adventure, beauty, and friendship told through the lives of a cricket, a cat, a mouse, and a little boy.

GIFTED HANDS for kids 

by Ben Carson

I loved everything about Ben Carson's biography and as soon as I finished reading it I told my husband I couldn't wait until our kids were old enough to read it. Problem solved- they made a kids' version! This story tells the inspiring and sometimes raw story of Ben's journey from inner-city Detroit to the chief neurosurgeon at Johns Hopkins. His story is filled with truth, perseverance, overcoming obstacles, tremendous faith in God, and good old hard work. I love this book and this man!!

ANIMAL ARK series

by Ben M. Baglio

We have loved this series. At first glance it may look like another dime a dozen series written just to sell to the elementary crowd, but these stories have so much more to offer. Mandy is the daughter of two vets who own a practice in a quaint English town. She and her best friend, James, share the same "vet passion" and find themselves rescuing animals of every imaginable type and tackling problems as they arise. The stories are well-written with great character and plot development. As you continue to read you get to know the townspeople and their community as well as you know your own. The books are no longer in print but can be easily found in abundance in libraries and used book stores. They do not need to be read in any particular order. Many have become cherished favorites and we have read them more than once already. (Note: there is a sub series of these books that are haunted stories, but those are not part of the originals.)

THE PONY PALS series

My daughter is a horse lover and we have cherished these books. They are written about three young friends and their ponies. The girls have a variety of adventures, solve problems, set and achieve goals, and model good friendship. We did skip a few a the books that had scary themes (ex. ghosts). Our only real frustration is these great books are no longer in print so we have had to find them at used bookstores and libraries. Their popularity can make them hard to find, but the effort is well worth it. We did find it helpful to read the books in order, too.

THE FAMILY UNDER the BRIDGE

by Natalie Carlson

This touching story tells of a homeless hobo in Paris who's path crosses with three homeless children. It is a book about love and family, but also the reality of homelessness. A tender book with a great message.

MISTY of CHINCOTEAGUE series 

by Marguerite Henry

A timeless classic with characters that find a place in your heart and never leave. We read the three books in the Misty series and loved every one. As much as I love the books, I also love their authenticity and historical credibility. I know we will read them again and cannot wait to visit Chincoteague ourselves one day!

HUMPHREY series 

by Bettey G. Birney

This new series has become a fast favorite in our family. They were written by a teacher who also includes questions and activities in the back of each book. All the books are written from the perspective of Humphrey, a classroom hamster in the second grade. Birney does an incredible job of developing the characters of the hamster and his frog buddy-Og; but also every one of the students in the class. You will grow to know and love each child and their unique talents, struggles, and personalities.The students take turns taking Humphrey home for the weekend and the author explores the many different home situations the students come from. We can't wait to see what Humphrey accomplishes next- such a smart hamster!

And next on our list...

The first book in the series "The Epic Order of the Seven".Written by acclaimed author, Jenny Cote who has been likened to C.S. Lewis and has a passion for teaching creative writing to children. She writes these novels combining Biblical history and fantasy to put readers right in the center of history, while deeply touching their hearts and minds in the process.

What are you reading now? What were your family's favorites?