a year

It has been a year. 
Sadie has completed her 1 year of chemo for Langerhans Cell Histiocytosis and her ivad port has been removed. Scans show a 1.5mm thickening still left on her pituitary stalk which is most likely scar tissue.  She passed her growth hormone test this time around (by *one* point... but still...she passed!)  :))  So i am chalking that healing up to "miracle".  She will always take Vassopressin to replace the hormone that the lesion on her pituitary knocked out and that's inconvenient... but minimal.   
The year has been filled with other emotional upheaval. Hard days i never dreamt i would ever see... and yet, i have felt... and daily feel, God's hand in each one in our family as he leads and teaches and corrects. I see that no matter how heavy it gets, God is stronger still.  No matter how huge my need becomes, His provision will be over and above.  God is amazing to me this year.... like seriously... amazing. 
That's all. 

Week at a glance...

Sadie getting ready to plant the garden in while wearing her sundress and rubber boots. (It was cold and windy.) 

We invited Grampsie over this week to teach the kids how to make poplar whistles. They were a HUGE hit. 

Wesley Cleaned his room by using his hockey stick to shoot his clothes in the general direction of his dresser.  Then he gave up and just stacked it all on top announcing:  "NOW do you think Ellie will sleep with me?"

Sadie recieved a package from her great aunt containing this stunning ensemble.  She was greatly pleased.

Science was accomplished.

Whistles were blown.

Teeth were lost.

Edible "cells" were made.

Dress-up like big sister.

More whistle making in the garage.

Sleepy week

A few of the kids have had sore throats this week including Sadie. What a couple "Halls" fixed for the others, is taking 3-4 hour naps for Sadie. School and piano lessons are being passed over and hoping the fresh air during her "up" times will revive her tired little body some. Enlisted Gramps today to tutor my Darren in some math concepts as I get caught up in housework and feel the impending headache descending. The other kids have been enjoying the schizophrenic Alberta weather. Sunburns, snow, sprinklers and bathing suits, rain, toques, mud puddles and rubber boots and the first 2 mosquitoes of the season.... I can hear frogs in our ponds and it makes my heart race. Summer is coming.

Family

Just noticed something...

As I was headed to bed tonight, I noticed something I hadn't intentionally done with my decorations. The majority of the prints on my walls depict either snuggling, sleeping or quiet moments. Interesting...especially considering my naturally high-energy/stress personality. How did I not notice this before?!

Sleepy Saturday

40 days for life.

I had signed up a couple weeks ago... 

 This hour of prayer, not in the comfort of my home, but on the street.

A street that balances an abortion clinic on one side and a Christian-run crisis pregnancy counselling center on the other.  I was to be a little slice of obedience, pacing the sidewalk between them... praying.

The day before i was to go, my husband Curt decided to come with me and we asked Grampsie to watch the kids.  I picked Curt up at his work and we went into the city together. 

I remember watching a video last year that my sister had made of 40 days for life.  One question she asked... and the answer that was given, has never left me.  In the video, my sister pointed the camera at a little Catholic grandmother and asked the question "Why is prayer so important?"  The lady, without missing a beat, answered completely backward to what most people would say.  "Because Prayer is how God speaks to us."  (Don't we often think that prayer is how *we* speak to *God*?) I had to watch the video again and again.  It was an amazing answer.  Today, as we paced, that video played in my mind.  I walked, and instead of my own words pouring out as they often do... God spoke.  He spoke to me when, while walking away from Curt, our baby Eva, strapped to my back, called out "DADDY!  DADDY?"  I spoke gently to her.  "Eva, do you want Daddy?  Is he going to come?"  At that moment, an image of Jesus' face was impressed on me with the thought that the children being aborted across the street were His children.  He was their Daddy.  I prayed "Come Lord Jesus." 

 Later, Eva decided she wanted Curt to hold her so i undid the backpack and Curt took her out and walked on ahead with her.  I snapped the backpack up again and began walking in silence.  It was then that God spoke to me.  "You are a symbol of what goes on here."  I walked in silence with my empty backpack... no heat from Eva's tiny body... just cold, empty wind.  God wants me to see these children as my own as well... not just His.   

When we had first arrived at the clinic, there was an older man in his 60's praying the rosary as he walked the length of the sidewalk.  Every time we passed him, the words "Beautiful Catholic" flooded over me.  The faithfulness of Catholics in particular choosing to be associated with this issue has encouraged me so much over the years. I want my faithfulness to be Beautiful too. Tonight, during Bible study with the kids, we discussed the verse in Micah

Micah 6:8

New King James Version

⁸ He has shown you, O man, what is good;
And what does the Lord require of you
But to do justly,
To love mercy,
And to walk humbly with your God? 

So much to learn... Come Lord Jesus.  

 

Oh the places you go!

Over the last few years, there have been intense days where my mind wants to be anywhere but the present. Times when I know that my "fight or flight" reflex is kicking in...and I'm leaning way more on the "flight" side than the "fight" side. I imagine "running away" alone, getting in my car and just driving, I imagine running away as a family... (the image of packing all the pills and meds kind of ruins the daydream... But i go there anyways.) But sometimes, my mind just runs away on its own...wanders back in *time* to specific moments.
Tofino.
Wide stretches of empty, cool beach. Watching the kids running on ahead... Free.
Wooden swords and shields from the Coombs marketplace swinging wildly.
I remember that hike along the ocean cliffs and forest at "Beachy Head" with all the kids and grandparents and the smell of moss, ferns, arbutus and ocean spray...
I remember that long prairie walk as a family through the fields.
The smell of alfalfa.
The sound of combines and the "aplause" of the forest of poplar leaves along the open field. I remember moments as a child, sliding open my bedroom window to press my nose against the screen and smell the coming winter air and hear the chickadees sing that minor tune they sometimes sing. I remember moments as a teen diving into the okanagan water, deep, deep down. The further down, the cooler the water became and the better it felt when that wild summer sun would find me again at the surface. I remember the day i revisited the run-down farm of my grandparents, now long gone, and the sensation that came over me as I imagined it the way it was...juxtaposed against what it is now. That moment made time, heaven, death, and life all new again. Where does your mind go when it craves an escape? Have you saved any precious moments? Do you breathe life into them? Draw strength from them, so you have enough for what lies ahead?

Promises

The promise is greater than "new circumstance"...

Isaiah 40:31

31But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Waiting on the One who holds me together.... As a science lesson/second bible study today, we watched Louie Giglio's session "How Great is Our God". That, coupled with my reading of Werner Keller's book "The Bible as History - A Confirmation of the Book of Books", has been such an encouragement to me this week. I disconnected from Facebook for now as I've been feeling so discouraged and distracted and figured I needed to just pull back and focus again on the things I want so much to *be* my focus... "Forgetting what is behind"... I'm going to "press on"...and wait on the Lord as He shows me exactly *how* to wait. It's not my forte... To wait... But the promise Is worth the lesson in discipline.

In the image of God

Men go abroad to wonder at the height of mountains,
the huge waves of the sea,
the long course of rivers,
the vast compass of the ocean,
the circular motion of the stars...
But they pass by themselves
and don't even notice.
- Augustine -

Hiding in the shelter of His wings

Matthew 11:28
“Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

Unashamed

Sitting on the couch with the whole family watching "Madagascar", Sadie suddenly plugs her nose and asks, "Okay!! Who farted!?". Without skipping a beat, 2 yr old Wes announces in a powerfully confident voice, "It was ME!!! ......AAAAND, I *pick* mine nose.... AAAAAND..... I ATE IT!!!". He gives her an angry stare for a moment. Her hand falls from her nose..... and movie watching resumes.

"Bookends"

This morning gramps was working at the table with the girls and I was working in the kitchen. Eva drove past in her little car... Wes ran past in his short jeans and tight turtleneck. I turned my back to run the sink. And that's when my "bookends" collided into squealing tires and motor noises and baby laughter. I turned around to see that Darren was taking a break from his school work to thrill his baby sister with a wild ride. Funny what an almost 14 year old determines would be fun for a 1 year old. It's all fun and games....

Last induction chemo before "maintenance" phase!!

Colouring the crap out of everything in the art room as we wait for this monumental chemo! After this is over, we only come every 3 weeks instead of every week and prednisone will not be a daily diet staple but a 5 day pulse. WA- HOOO!

Siblings

They pair off to hunt, play cards, sleep together, ride horse, play music, listen to stories on cd's, wrestle, do crafts, work their chores...so thankful that they have each other. So thankful that they are mine.

Text- Talk

As we were going out the door to go to church tonight, Wes unloads his tiny pockets at the doorway.
Wes: "I Has MONEY!"  (pennies, dimes and nickles roll on the wood floor)
me: "Where did you get that money Wes?  Did you take it from dad's drawer??"
Darren: "He's been stealing from everyone's room lately...B.T.W. mom."
I look up at Darren.
me: "Um... don't say that."
Darren:  "What?!   BTW...By... The ... Way...?"
me:  "I know...  It's just weird to talk like you are texting."
Darren:  (laughing in his deep deep teen voice)
Sadie:  "He stole that money from Ellie's room!  I saw him do it!" 
me:  "Let me guess F..Y..I?"
Sadie:  NO!!!  silly!  It's E.. L.. L.. I.. E!!"

September-November

Sadie in September '11 and November '11:I have been shocked by the change in my little girl over the course of the first few weeks of her chemotherapy treatment for  Langerhans Cell Histiocytosis.  The prednisone, famous for weight gain and "moon-face", has most definitely left it's mark on my little girl.  2 more weeks of weekly treatments of vinblastine and heavy predisone until we change to treatments every 3 weeks for the rest of the year.  She is grumpy from the medication as well so we are having a lot of heart to hearts and cuddle time.  Grampsie is back and helping in every and any way that he can find to do.  He came to the last treatment with us and the port was not working properly.  Nurses suspect a small blood clot that may be blocking the tube so we will go in early next week and see if there is still a problem and if they still cannot draw blood from the port, they will flush it with a powerful blood clot buster and also send her for x-rays to make sure that there is not a problem with the actual Ivad tubing and placement.  The other kids are doing so well.  Robin has needed a little extra love with all the changes and also came with us to the last chemo.  It has SNOWED, so the kids have been spending every afternoon after school skating on the pond in the back 40, x-country skiing around the perimeter of the yard and practicing archery in the barn.  We set up the Christmas tree and made decorations today.  We also re- started the afternoon winter tradition of popcorn and hot chocolate when they come in with ruby red freezing cheeks and need a warm up.  It's the little traditions that make life feel normal... even though i know that it will never be the same again.  Sadie will never go back to being the same girl she was in September.  She changed day one.  My sister reminded me of a passage in Anne of Green Gables where Anne lost her baby.  The book describes her face as having a quality that it had never had before... and would never be gone from her face again.  Some things in life leave their mark... and this has been one of them.  When chemo is over, Sadie will begin growth hormone treatment and she will change drastically again in a short amount of time.  Her childhood pictures will have a strange sort of feel... not the gradual change that we all normally have, but huge leaps into sickness and healing and change.  It's drastic... and the change in me is drastic too.  I feel my heart exploding into a thousand different questions and thoughts that i am nesting on.  Praying that God would give me the proper perspective to be the kind of mom he is calling me to be in all of this.  I surrender...and now what does that look like?  It feels like certain death for part of me... but maybe that part was never meant to live... and when it dies, something beautiful will take it's place?  "Unless a grain of wheat falls to the ground and dies..." thinking of that verse tonight...-j    

Wild Wes

It's been a long two weeks.  I've been sick and now i've lost my voice completely.  Curt will have to take Sadie in for chemo today.  She was teary last night and this morning as it will be the first hospital visit that I haven't been able to go with her.  She seemed to accept it okay when i told her that we didn't want to make the other kids in the oncology ward sick as their bodies cannot fight sickness when they have lower blood counts.   I was washing up with Sadie this morning when Wes, my loud talker comes in with a huge announcement.  I answered him in a whisper.  He stopped, leaned over the tub and asked "How come you can't talk!?" I whispered "I lost my voice Wes!" His eyes got real big and serious and he slowly shook his finger at me and announced, "Then Wessie will FFFF- FIIIIND it for you!". Love that boy.  During chores he had pulled my arm over to the comfy chair in the kitchen and begged "Love me Mom!"  So we were snuggling when Robbie came up and carefully asked "Can I have some G-U-M?"  I said after chores were done she could.  Then went back to snuggling Wes.  He was quiet for a minute and then said "Jew-EM??.....Jew-EM!???...I want some JEW--EM!?  Can I have some JEW--EM?"  I guess a careful spelling of gum wasn't enough to deter a 2 year old.  If someone else is having it... he must have some too.  Maybe I should tell him that the other kids already finished some p-o-t-t-y-  t-r-a-i-n-i-n-g... maybe he'd want a piece of that too.  :P    

Dad

Dad: The guy who came, picked up the dropped balls, drills the middles with math facts, cuddles the baby, works at taming wild Wes, coaches the older two with their school work, helps me process all the tomatoes, loans me his car for chemo appointments in the big city while he teaches homeschool to the older 4, takes the little ones to the barn to see the baby goats, brought a theme song with him "Workin' for the Man" by Roy Orbison to be blasted during chore time, took my 13 year old son shopping for his first suit so he could usher at a wedding, started a reading club with the kids called "The Century Club", reads the bible with all the kids every morning, tells stories to Wes non stop about his favourite subject, "big, fat wolves", cheers like a madman at cross country until he can't talk anymore, gets the coffee pot on in the morning, puts together "best friend picnics" for the kids, pulls the kids aside for "one on one" encouragement, makes emergency runs to town... and keeps everything upbeat, and my days filled with the sentimental sounds of my childhood with his singing and guitar....and so much more.... Thanks Grampsie... as Wes would say "I *DOOO* love you. -j

How's It Going?

We had gone up for prayer before we went to see Dr. B. to hear the diagnosis... not for healing so much as out of obedience. I believe God can heal, but before we had gone to church that night and all through that day the words from Daniel 3, "But even if He does not..." kept repeating themselves in my mind. I felt that, this time, we were headed towards a "fiery furnace". What i *didn't* imagine, was that we would also be spared from the flames so thoroughly as Shadrach, Meshach and Abednego had been. We are in the middle of the third week of chemotherapy induction, i do really feel like we are cheating death a little. Sadie has had very little in terms of side effects. Some weepy/clingy *moments* and needing to snuggle, some bone pain, and voracious cravings and weight gain... but something stands out on the chart i have been keeping. Every day we have been able to put down "active" and "happy". Most days, there is nothing out of the ordinary for Sadie and her attitude has remained so up-beat. I am thankful for every good day and cherishing them as i think of the angel who was seen in the fire with the boys in Daniel. How's it Going?....It's Good.

Treatments

Grampsie asked me the other day about the medications that Sadie is on and what they were supposed to do. Here is a simple explanation clipped and pasted for those of you who are medically bent:

General Information About Langerhans Cell Histiocytosis (LCH)

Langerhans cell histiocytosis is a disease that can damage tissue or cause lesions to form in one or more places in the body.

Langerhans cell histiocytosis (LCH) is a rare disease that occurs when the body makes too many Langerhans cells. A Langerhans cell is a type of white blood cell that helps the body fight infection. Langerhans cells (also called histiocytes) are normally found in the skin, lymph nodes, spleen, bone marrow, and lungs. In LCH, extra Langerhans cells spread through the blood and build up in certain parts of the body, where they can damage tissue or form tumors.

Scientists do not agree on whether LCH is a type of cancer or is a condition caused by a change in the immune system. LCH is often treated with anticancer drugs that may also be used to treat immune system conditions.


Prednisone - Prednisone is just an oral form of Cortisone. It is a steroid hormone. Prednisone decreases inflammation by preventing white blood cells from functioning properly. More specifically, the drug interferes with lymphocytes (one of several types of white blood cells). The presence of white blood cells result in inflammation (for many reasons, damage to tissue, fungus, virus, bacteria, allergens and almost any foreign invader) - they go to a site and their presence inflames the area. Prednisone causes lymphocytes to break apart and die. The lesions in histiocytosis usually contain lymphocytes, so prednisone attacks the lesions.

Vinblastine (Velban) - Vinblastine is a plant alkaloid and inhibits mitosis or cell division. Vinblastine disrupts cell division, resulting in cell death. Specifically, it works to inhibit mitosis (cell division) in metaphase. Vinblastine is actually derived from the Madagascar Periwinkle.

Basically, these two drugs working together cover both possibilities of LCH being either a faulty immune response (by prednisone breaking apart white blood cells in LCH lesions) or a cancer (by stopping cell division in the lesions). -j

Sleepless

What i need most, sleep, my mind won't allow.

I want to carry it...

the disease

the poison (that is the cure)

her suffering...

but

this burden won't lift.

It wants *her*.

She's 5...

She buries her face in the barn kittens and gives them names: "Isabella" and "Sara".

She sets out the dishes and mini tea-pot to have tea parties with her 2 year old brother.

She sneaks out of her bed at night and cuddles into bed with her 8 year old sister Ellie.

She rolls and rolls like a sea otter in the hot tub in nothing but her Dora undies.

She tells Curt "When I grow up, I'm gonna marry you Dad!"

She looks up at me when we go for a walk and squeezes my hand 3 times which means "I love you"... and then quickly tells me "But I love Jesus more!...Is that okay?"

She told me her favourite things about the hospital were "jell-o" and "snuggling in bed with you mom".

She's 5.

It's too heavy for her.

I want to take it from her...

But the burden begins...

and i am helpless.

The chemo flows through *her* tiny veins...

not mine...

no matter how willing i am to take it in.

She's only 5.

Sorrows divided on a Tuesday

Sadie had a hard night. I cuddled her into a morphine sleep and she woke up in pain at 3 am needing more. The nurse came and gave her what she needed and i cuddled back in with her until she nodded off again at 4... and then couldn't get back to sleep myself. I turned on my phone and sent a message to an old friend i recently re-discovered. Lisa wrote me back 7 minutes later...she has been down the cancer/chemo road many times and is in the middle of another fight. There is nothing like sharing pain with someone who has been where you are...and has travelled down the road where you are headed... who is up at 4 am because they are hurting too.

After a long day of pet/cat scans, hormone stimulation tests and meeting more specialists and nurses than I've ever met in my life, Dr. B decided that it would make sense to send us home for the night. Sadie's chemo wasn't going to be ready until 9pm tonight and then we would have to stay the night again and they needed our room for another family from Calgary. I was thrilled to go home... one more day to let the reality of the coming chemo sink in. One day with all of us back together under the same roof before this sharp turn.

Curt came and picked us up and drove us home. The kids ran out to meet us and Ellie wrapped herself around me in a bear hug. So happy to have us home. When we came in the door, Sadie's face lit up to see the huge banner Grampsie had made with her brothers and sisters "Welcome Home Sadie!!" And then we melted into the mundane. Games of crib, music, books, quading, feeding the goats, snuggling on the couch, and I snuck around stealing each one of the kids off to a little corner of the house for a "one on one." Darren wanted hugs and he wanted me to read his latest writing for school and help him with some music. Robin wanted to talk about what a great teacher gramps was. Ellie wanted to tell me how independent gramps was letting her be while working on her math. Wes wanted to cuddle and have books read to him. Eva wanted to nurse. My oldest daughter Carrie melted into tears on my bed. "Mom, she's all bent over when she walks... she's so little and in pain. I didn't think it would be this bad." We talked like friends... like equals... sharing pain. I thought of my newly "re-found" friend Lisa and explained the old quote to Carrie that says "Let it be that a joy shared is a joy multiplied and a sorrow shared is a sorrow divided." Thankful for family and friends who have chosen to divide this sorrow amongst them and bear this burden with us. Thankful for Lisa who lets us divide her sorrows... Thankful for sorrows divided on a Tuesday.

Lies on a Monday

"For my sighing comes before I eat, And my groanings pour out like water. For the thing I greatly feared has come upon me. And what I dreaded has happened to me. I am not at ease, nor am i quiet. I have no rest for trouble comes." Job 3: 24-26

Last night we had a home bible study kick off which had been planned for months. I was honestly really wanting to hide in the bedroom but it ended up being a good, upbeat night with less worries than I would have had if I had locked myself in my room. Guess who showed up? The nurse from our church who had greeted us at the pediatric oncology clinic! Also, when I went to superstore earlier that day, I turned around just in time to see Sadie's oncology case worker round the corner by the health food section. Interesting coincidences...
This morning, we rolled our little suitcase into the pediatric oncology ward and there was "Rae-lee", the nurse who forever will be the image of God's wink, waiting to greet us. My heart was churning like my stomach but I cheerily pointed out Rae-lee to Sadie as I squeezed her tiny hand 3 times. (3 hand squeezes means "I love you" in our family). I chatted up Sadie and the nurses and laughed about farm animals and which of our animals was the ugliest while they took her blood... And my head spun and heart ached. My outward attitude and my inward emotion did not match... All lies I became worried they were going to cancel surgery because of her cold and I was also scared they would go ahead with The surgery....I didn't mind the 2 1/2 hour wait until she went in. I wanted time to stand still... Another little girl invited her to watch her get her chemo and i wanted to bawl. I talked like an excited kindergarten teacher... More lies. Time was not going to stand still...Her name was called and I happily took sadies hand and talked to her as if we were going to grandmas house. Oh what lies. I couldnt see her doubt but I could feel it. I changed her into her gown and she clung to me. "I need ALL your snuggles Mommy!". (finally some truth). "I need all your snuggles too Sadie!". We clung to each other up to the operating room. When we went in all I saw was "operating room equipment" and fear filled me. They asked Sadie to get on my lap and I held her tiny form as the drugs took her away in less time than I could name all of her brothers and sisters who would visit her later. They took her from my arms and the "show" was over. I disintegrated into tears and sofly begged the surgeon to be gentle...adding. "I know you will...". Curt texted me and when we saw each other across the cafeteria I lost it again. He handed Eva to me and I buried my tears in her baby neck with kisses. When he left, I hid in the darkened toy room of the day ward. Another mama found me there, turned on the lights and brought her daughter Desiree in to talk to me. "You're new aren't you?". We shared stories and drug facts and time-lines and her daughter who is a dancer, showed me her foot where the tumor had been removed and talked about
Why she chose to keep the hair that didn't fall out (tiny long strands) braided in a dainty braid down her back and why she chose the port she did. So mature for 10. Sadie came to me wheeled on a bed, teary and tired and sore. Today was not the fun one on one date we pretended it to be... But she knew it all along. Last week it was all about truth. What would happen today, how it would feel, how it would look... (you tube was a treasure trove for prep)... But today was a day of lies... Sweet little lies. I love you baby. You did so well living in the land of let's pretend today. But now the truth; today wasn't a fun one on one date with mom.

Today was the day you got your "port"... Today hurt... In every way. Today we clung to each other because we were both afraid. Keep clinging baby. There will be more days of pretending...

The cup.

When we got the chemo treatment plan for Sadie, i went home in frenzy mode. I couldn't stop working, cleaning, baking, playing, planning, sweating. People were talking to me about Sadie and i felt i was talking a mile a minute and to be honest i felt a little crazy. I was going all day without remembering to eat or drink. Bedtime would come and i would lay there for ever, going over and over in my head the last few weeks of staying up into the wee hours of the morning taking notes of internet lectures on LCH. Then i would go over again the diagnosis conversation...and finally start agonizing about all the "what ifs" of the year to come. I would wake up at 5 am and that was it for me... i was up. And then i crashed. I wrote my family who have been praying for us. Some words just have to come out or they will beat your heart out of you:

"I Can't sleep anymore... can't eat, forget to drink, sweating like crazy and working like i'm posessed. I wake up too early and then think about how Sadie will feel after surgery... and that it`s just the beginning for her...Thinking of Jesus praying `Father if it`s possible, take this cup from me.. and then...let your will be done...`and it has new meaning...and it`s terrible. He was truly human and he understands this fear. But it`s 5 in the morning and i`m sobbing on the couch. I wish it were me that could take the cup from Sadie. -j"

There are so many moments from the past few days i want to keep in this blog, all together. I may clip and paste from here or there as it's hard to get it all down. Time is suddenly speeding towards a sharp turn and I want to capture every moment of our lives "before chemo" as i know in my heart that life will never be the same again.

Sadie's Diagnosis

Some of you will have read this already, being friends on Facebook... but i wanted it here for *me*. These days are moving lightening fast and i want a record of some of the events that shape this year. When everything began with Sadie the blogging was frustrating. We knew she had DI... but not *why* she had DI... we felt there had to be a reason behind it. Doctors suspected too but needed more evidence to prove their diagnosis. Recently, we went for our regular endocrinology check up and talked with Dr. M. When she was weighed and measured, the nurse stopped when she plotted Sadie's height and looked at me..."Oh! It looks like she took a dip on her height curve chart." I wasn't concered because the last i heard was that her growth factor tests came back all within normal range. Then we saw Dr. M and he informed us that one of the tests did come back low. We were sent for a hormone stimulation test to measure the actual growth hormone and a general hormone check on everything else. This was a 5 hour, two part test. Results came back and one part was low and the other part was MISSING! They missed even checking the growth hormone for the second part of the test. SO, we went in again and results showed that she also was not producing growth hormone for the second half of the test. Because of this, we were sent back to Dr. B.... the pediatric oncologist. After 2 1/2 years, we have a diagnosis and an answer as to *why* she has DI. Sadie has something called Langerhans Cell Histiocytosis, It is rare. Scientists do not know whether to call it a cancer (where the cells are cloning) or an immune response disorder (as it is a langerhans cells...involved in the immune system that are "gathering" all in one spot). In her case, they are "gathering" in her pituitary. To me, it doesn't matter... it acts like a cancer, it is treated like a cancer, and it's dangerous like a cancer... and it's in her pituitary. It is "high risk" for recurrence (40%) and also for neuro-degeneration down the road as it is considered a "special site" being in the head. Dr. B's response to these findings was swift. Sadie will be given 12 month long chemotherapy which clinically has been shown to cut the chances in half and also be on steroids for a year. Here are the findings all together so that you can get a picture of where we're at: MRI imaging shows her pituitary is in the wrong place, not lit up ( which means it's not working) and also thickened. She has lost the ability to hold water (Her Anti-diuretic hormone has been gone for 2 1/2 years) and she takes a synthetic hormone to replace that. Recently, tests showed that she had also lost her growth hormone. Growth hormone affects every aspect of your body (hair, teeth, bones...) so after this is all over, she will have to take daily injections of a synthetic version of that hormone as well. To look at her, she looks like the perfect, happy kid, but this disease is in the brain, slowly stealing hormones and has a high chance of spreading. The next likely hormone to be knocked out is her sex hormones (these hormones tell the body when to hit puberty and for how long...etc) Doctors were unable to take a biopsy of the pituitary so were waiting to treat until they had more evidence. That's why diagnosis was suspected for awhile now but she wasn't diagnosed. It has felt to me like someone told me "your child is drowning... but let's stand on the dock here and just watch her flail for awhile..." There is relief for treatment finally and at the same time... a creeping in of fear as we teeter on the edge of this cliff. The other kids have been playing "Doctor" with the little ones in prep for this coming week as Sadie will have surgery to implant a port for chemo, a pet/cat scan to look for other lesions, a hormone stimulation test to check her cortisol levels before prednisone affects them so they have something to compare, and then she will start her first treatment of chemo and steroids. We made up a little picture map of each test and for how long it has to go on until she can move on to the next one and finally come home. The medicines are prednisone and vinblastine and most likely she will gain quite a bit of weight, be grumpy and...the rest i'm going to hope is minimal. Her hair most likely will *not* fall out with these meds...which she has started to be a bit concerned about the chances of... anyways, if you would pray for confidence, a positive attitude and wisdom for us as parents, grace for the other kids, *strength*, minimal side effects and healing for Sadie, that would be good. I know people will tell her she's brave. I know there will be moments she won't feel brave. Holding my breath. When we went in for our appointment the other day, i was sitting at the kiddie table with my binder of studies and notes and another notebook i had filled with diagrams and notes from online seminars and the nurse came in to get Sadie. It always feels so foreign to be at the hospital...especially in the pediatric oncology unit... When i looked up to greet the nurse, it was a lady from our church! I don't know her well and i had no idea she worked there... but I just fell into her arms. Her presence there was like a big *wink* from God saying "Hey Jess! I'm here too!!" We are really sensing God's presence through all of this. He has placed himself so obviously in the "details"...falling in love with Him in a new desperate way. - j

The Big "One"

In a week full of beautiful events: visits from friends i haven't seen in years, a men's hunting trip for Elk before the school year starts, a last minute road trip to Grand Prairie to see my 7 nieces and nephews all be baptized at once... landed this precious little milestone... Eva's first birthday. :) These traditional extended family birthday meals have become so familiar, comfortable and anticipated events. This first birthday passed as sweetly as all the other first birthday's before it. Eva sat on Robin's lap to open presents. When she opened a little pack of rubber bath toys Wes declared "That one's for ME!!" :) She ate more ice cream cake than ham and scalloped potatoes, she fell asleep before the first guests left and she spilled a full, icy cup of pop down into grandmas lap. Eva, what a precious gift of life you bring to this home and family. May God be the center of your heart...because out of your heart flows every other issue of life. I love you.

Sadie update: I called regarding Sadie's hormone stimulation test results and got this disappointing response: It was a two part test and one test confirms the other test. Both have to say she is low in order to confirm that her growth hormone has in fact been affected by the lesion on her pituitary. The first test came back at 3. She should have hit at least 8. (an obviously low reading) A few days later the second test came in and the lab had neglected to even check growth hormone! SO... we have to go back in to do the second half of the test again. Our road trip and visit to Grand Prairie will be shortened to one day so that Sadie can go back in to the hospital Monday morning. My good friend Crystal arrived on the day we got this news and the day she left, we got talking about the saying "it is what it is" and how much i have come to love that saying....With a heart that so anxiously wants to worry no matter if i can do anything or not, those words have a calming affect on me. Crystal has a Japanese heritage and she told me, "The Japanese have a saying which means the same, "Shikata ga nai." which translates "It can't be helped." Trying to let my shoulders hang looser as i let those foreign words roll off my tongue today.

sadie update-July 2011

I haven't posted in such a long time and so many happy days have gone ahead of this one... it's a shame that they aren't included in this little record of our lives... but for today, it's Sadie again. I know my extended family reads this as it is passed around so it has become an easy way to update everyone at once as to what is going on with Sadie. We had our follow-up appointment with endocrinology this morning at 8am in the city. The last MRI showed (again) more thickening (a 3mm thickening of Sadie's pituitary, which is considered "abnormal"). Pediatric Oncology was supposed to weigh in on the results from this May 10th scan but after 3 calls this morning, he still has not compared scans. I received an apology and a promise to get it done right away and an excuse that he has been away and that he was not sure whether to leave it or not as there hadn't been a change in any other area. There has been a change though...and after typing this part 4 times over, i'll say it as simply as i can. Her growth hormone byproduct (which they tested recently) is low. While "normal" is between 50 and 248, hers is at 32. This finding, put together with her growth chart, which today showed a dip instead of of a continual up-ward curve in the height department is leading us to the next step. Sadie will be admitted again for a 4-5 hour test in which they will inject a medication which should force her body to produce growth hormone so they can measure the growth hormone directly (and not just the by-product of the hormone). Her blood will be tested repeatedly over the 4-5 hours. If she passes this test and peaks at "8", we're off the hook. If she does not peak at "8", she will need growth hormone injections daily. Just like her Vasopressin deficiency, the growth hormone deficiency would be a permanent thing. Please pray with us that this hormone has not been wiped out as well!...and if it has, that we will have the wisdom and strength to deal with the journey in that direction towards pediatric oncology. Thanks for reading this if it was passed on to you... and if our little one comes to your mind please lift her in prayer to our Heavenly Father who knows and loves us all best.

She's come undone

Life has been a good kind of busy and full lately but it feels as though all i do is stand in the middle of the action and bite my fingers. Curt and Darren stole away for a night on an impromptu bear hunt, Wes (2) has been hunting moles and learning to ride his bike, Carrie is one of only 2 girls on her highly competitive ball team and is going full tilt as are Robin and Ellie who are being coached by Curt this year. Darren has ball too but it seems to get cancelled more often than not, which suits him (and me) fine. A lot of nights i am left home with the three little ones while the rest head off to their respective diamonds. Sadie and Wes are not that fond of baseball and trying to watch a game and nurse a baby, deal with a potty trainer and a 5 year old who wants to go for ice cream is not as relaxing as staying home and playing in the bush. Potty training has backslidden for poor Wes as we tried to get his daytime nap back in there somehow. That's been discouraging! But he is a goofball and tease and maturing in so many other ways. The other night I said "I love you Wes!" and he answered with "I wuv my bike!" When i reacted to that he thought it was great fun so now he will come up to me and say "Do you wike me?" and i say "Oh Wes! I LOVE you so much!" and then he will say "I Love DAD!!" and laugh. The other day i said "I love you!" as i left him at his grandmas to make an appointment in town and he responded with "I wuv you too mom." I went wild and ran back to him with hugs and kisses and then he laughed and said "I wuv buggin' you mom!" Some days i can't believe that he is only 2! Such a tease. Sadie has been planting little gardens of wildflowers and vegetables in the bushes with me and the rest of the kids and making mud cakes with Wes while we build forts and shower each other with bug spray. She hasn't changed for the worse or the better that i've noticed other than complaining of headaches more often than my other kids ever did and having less energy than they did. Her most recent MRI showed a 3mm thickening of the pituitary stalk so we have been getting blood work-ups again... and i know this is one of the reasons for my anxiety. When there are suspicions with Sadie's MRI's, i seem to gravitate again to late nights of researching on the Internet and i feel like i could let the world go on ahead of me but i just have to wait in that same spot until the doctors tell me it's all going to be okay again...The children's game "Red light/Green light" comes to mind as i try to explain my feelings. Right now, i'm frozen on a "Red light". Blood tests that have come back so far for tumour markers and hormones have all been good, so now we wait to see what the pediatric oncologist has to say again...No easy way to diagnose LCH... if that's what it is and lesions could take years to appear after initial DI symptoms are apparent...and so... Here I stand...in the middle of their growing up years... holding my breath. It's not me. I was designed to be a whirlwind of activity...and yet, God has provided for me to sit still and listen for His voice. I'm not angry anymore, like i was for years after Darren was diagnosed with epilepsy... and then again when Sadie seemed to be such a medical mystery. I noticed the other day that my anger is gone. I'm sad. I think the sadness was always there but it was mostly overshadowed by my anger. I've had sadness burst out of the cracks though... laying in bed one night and suddenly, surprisingly, out of the blue, i burst into wracking sobs. Curt, awake beside me didn't say a thing. Didn't even roll over. I think he *knew*. I've been praying for a new perspective though...and i think this sorrow is a move in the right direction. I'm done having a stare-off with God. I'm feeling more like falling into his chest. My inadequacy is obvious...the doctors inadequacy is obvious...but God is *not* inadequate. He is the designer of my children, the designer of this life and this heart. And He's pulling me in closer to His life, and His heart.

Do I look okay?

After dropping Darren off at youth, we stopped by the grocery store to pick up party food. Getting out of the van, Robin suddenly realized what she was wearing..."Um, mom, do you think i look okay?...Maybe I should stay in the van!" I hadn't noticed anything out of the ordinary so looked up to see what she was talking about. Curt saw her first and burst into hooting. "Woooo HOO HOO HOOOOOO!!! You look FANTASTIC! WOW!" Robin: "Um, maybe I'll take off my coat. Is this better mom?" Me (laughing) "I have to get a picture of this!" Curt grabbed her and posed. As we walked in she ran up next to me, needing reassurance. "Mom, do you think i look weird?" And as if on cue, a man walked by, pushing his cart and wearing plaid pajama bottoms blowing in the spring breeze. "Are you kidding Robin? Look at that guy! He's got his jammies on!!"

The "Kids"

I was preparing pork chops and rice tonight for dinner and Sadie walked past me with a little white bowl filled to the brim with raw rice grains. "I'm going to hide these ALL over the house and then we can go find them!!" (*big happy grin*)

At the dinner table today Darren was teasing Wesley. Wes was trying to tease him back by yelling "Don't Robin!" "Don't Carrie!!" Darren looked at the rest of us. "See? That just proves that I am Everyone and Everything to him!"
...perspective. :)

The Homecoming

Sitting at the piano tonight after the little kids were all tucked away, I lured Darren in with his fiddle to play worship songs with me. I have been making lyric sheets up with harmonies written in alphabet form... I am not good at writing out music properly...but Darren gets it. :)
So many nights since the kids were little have been spent by the light of my piano light belting out worship songs by myself. I wonder if my kids will remember that about me.
The way i remember my mom.
When my sisters and I were put to bed at night i remember listening to my mom at the piano. One song in particular stands out for me...for all of us. It was a popular song at the time. She played "The Homecoming". Even the name made my sentimental heart ache, and laying in my bed each night listening to that same melody is a memory that is hard to package in a story for my kids... it was hearing the emotion in the way mom played too. I wondered what she was thinking as she played. Some nights i feel like i am playing myself towards a "homecoming" of my own. I ache for Heaven. I can't wait to see Him face to face. I wonder if my kids hear that when i play. I hope so.

The Tea Party

Sadie and Wes bringing their plan together.

Chef Wesley.

Buddies.

Preparing desserts.




Sneaking a taste.