Sadie's most recent MRI results

Here is the e-mail i sent my family this afternoon. Blood work is done and now we wait...again.

"You can send this out as we are asking for prayer. Sadie had her repeat MRI today at 10 am. At 3:30, Dr. M called us with the results and said that they found a change. There is a thickening of the pituitary stalk that they had been looking for and this is a change from the previous MRI results. (Repeated MRI's were to look for "changes" as a small, slow-growing tumour may not necessarily show up in the first MRI's.) He said that this could either be nothing, or it could be very serious. It could be one of two things:
1. a brain tumour
2. Langerhans Cell Histiocytosis (which her history leans more towards)
From what I've read in the past, both would require chemotherapy. Dr Marks has already talked to the Hematologist/Oncologist and said that he was going to call them back after he got off the phone with me. He is sending a requisition to the lab for us to get done and he said that we should have an appointment with Hematology/Oncology within 1-2 weeks. I just called the lab and the rec came in so we're going to go in tonight and try to get it done before the long weekend. Please pray for Sadie and for us as we navigate these waters with the kids. I am usually a woman of too many words and i don't want to say too much, or the wrong thing, or jump to any conclusions. Just to handle each little piece of information as it comes. Asking again for wisdom. -j"

As long as...

A family friend recently asked Curt if he was looking forward to having a boy or a girl.
"Well, it doesn't really matter!"
She laughed and then said something that a person hears a lot when they are expecting:
"Yeah, i guess so. As long as the baby is healthy!" Curt, without thinking blurted out, "Actually, that doesn't really matter either." She looked a little taken aback and then Curt tried to explain why he had said that. "Well, i know what you mean but... We've had 6 children born to us. They were all "healthy" and "perfect". Seven years after Darren was born he was diagnosed with epilepsy. At three, our daughter Sadie was diagnosed with a rare hormonal deficiency called diabetes insipidus. There are no guarantees in life and although we don't want them to be in pain or suffer, we wouldn't trade them for any other two healthy children in the world." When he got home that night he brought up the conversation with me and how he had surprised himself with what he had blurted out. "But Jess, it's true." Yeah, it is.
"As long as they are healthy..." what?
-then i'll be happy?
-then i'll be thankful?
-then i'll know that the pregnancy was "worth it"?
-then i'll know that they will have an easy life and not worry?
not true.
Jesus,
My children are in your hands. I give them back to you. With their strengths, with their frailties...."as long as they belong to you...then I'll know that they have been *fully delivered*.

answers

I can hardly believe this is true, but it's been 9 months since Sadie started drinking up the world and we thought no one would believe us that something was wrong. It's been six months of waiting for the "follow-up" MRI. It feels like I've been holding my breath for all that time. Not having anything else to say because all i can think to say is..."We're still waiting..." Waiting to hear whether there is a visible *reason* for her problems. I'm torn. I want answers... but i don't want an answer that is given by an MRI of her brain. Test is on Friday.
Pray that if there is something to see, they won't miss it.
Pray that if they do see something, they will be SURE...no guessing.
Pray that Sadie will do okay with the anesthetic.
Pray for our faith to increase.

Nothing good happens after midnight.

o.k, o.k....i know it's midnight and I've learned over the years that my mother was right. "Nothing good happens after midnight." These are the hours that my worries drag me out of bed. Why did we have to watch that stupid episode of "Little House on the Prairies" on the way to x-country this afternoon? Curt and I sat in the front of the suburban and listened to the soundtrack of the episode the kids were watching in the back. The one where Mary is kicked by the horse, gets an infection and has to go to the big city hospital for surgery. I've seen it before...I know it ends in blindness. I crawled into bed tonight and layed on something soft. It was "Blaash", Sadie's plushy lamb her uncle Neil gave her when she was in the hospital. Whenever i bury my nose in it's softness, i smell my sweet Sadie. I keep trying to forget that she has to go back. I just want to believe that she's all better. We have a synthetic hormone that's working for her....
Can't we just leave things the way they are?
Do they really have to look for a tumor?
I'm afraid.
I'm learning that I'm not a good fighter... Maybe we all feel that way though sometimes?...I hope it's not just me.
"So much pain to avoid, so little time."
God, I need your strength, your wisdom, your heart for this leg of the journey. I need you.

2 Corinthians 4:16-18

In university, one night, the girls in the "North Upper" dorm decided to each write out on an index card, a verse from the Bible that meant something to us and then exchange them with each other. The dorm's Resident Assistant drew my name to give her card to. Her verse was 2 Corinthians 4:16-18. Not sure why some little scraps of notes survive the years and others don't but this one has. It was tucked away with other poetry i had taped all over the walls of my room and had saved when i went home from Trinity for the last time. Now it sits on my desk by my phone. I find that the words are starting to mean more to me as time goes on. With Sadie's strange illness and the frustration, confusion and worry that seem to follow me like a cloud these days, this verse has become a reminder to keep my eyes focused in the proper place. Not looking behind to see where I should have fought harder with the doctors and less with Sadie... not looking ahead at all of the unknowns and "what ifs".
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Sadie: a water fight of one.

This is a picture of Sadie after a water fight but it closely resembles what she looks like most of the time around here these days. She has been sick with a hacking cough and stuffed nose which translates into ineffective hormone. The hormone is administered by me blowing it up her nose through a tube and it's just not gettin' through. I tried Dimetapp to clear her up before administration but it's still not great. Looking forward to this cold passing so that she can have relief from her "wet and thirsties" The fridge water dispenser is slopping water all over the front of the fridge and floor all day, I picked up 7 cups Sadie had strewn all over in her effort to get what she needs. She sleeps on the floor of our room because she is thirsty all night and needs her pull ups changed 4-5 times a night. (not as many as it was...but still) I was hoping she wouldn't catch Wesley's terrible cold. He's been battling the Dreaded Snots for almost a week but is finally coming out of it. (thank goodness!) Just a simple cold makes life so complicated for her. On a happier note, she is learning to read. :) She decided that she would like to read like the rest of everybody around here so i started her on the 100 easy lessons and we will see how far she goes. Lesson 6 so far so good and she's loving it. Such a happy little one.

Nothing can separate us from His great love...

Had a dream about the kids last night. (For those of you who don't normally read my blog, you will need to know, for the sake of the dream, that i have a son with epilepsy and a newly diagnosed 3 year old with "partial central diabetes insipidus")
Was on a long journey to get help for the sake of my children.... sleeping in shallow ditches and hiding from the enemy at night. When we got to where we were going, it was a large open field we waited in. Darren and I were the focus of the dream at this point. We were sitting on a long, wooden bench. Behind it was a curtain where thieves were stashing stolen items. We were surrounded by thieves and robbers and they were a part of where we were coming for help. A loud speaker announced that Darren was buying something. A Daniel Boon lid for something we didn't need or want... 40$ (everyone around laughed.) We were shocked. We didn't ask for, nor want that item, nor want to spend that on a worthless item. The loud speaker announced that we were paying 50$ so our change was going to be one dollar! We were being cheated...over something we didn't even ask for. I took the kids to the "cashier/receptionist" to clear things up. It was confusing... and they didn't want to listen or help. As i was dealing with the lady, Ellie, my 6 year old pointed out a little boy who was standing by the doorway and said to Sadie, "Look, that boy is about your size." As my back was turned, trying to deal with Darren's issue, Sadie went over to meet him. I turned around and a crowd of people were sweeping out the door... and her with them. I asked the lady to wait and ran to get Sadie. When i came out the door, everyone was gone, Sadie was so tiny and in a hospital gown, smiling and gliding towards a nurse in an open doorway. I sobbed, knowing that she was going to die and yelled out "no!"... The nurse was kind and brought me along with Sadie, but when i went through the door Sadie was "gone"...all there was left was to find out why...the dream went on with the process of brain scans, extremely detailed pituitaries with salt crystals floating out of holes along it's scaly length, conversations with doctors with Wesley in my arms and the other children standing...waiting....
Today a package came with the kids' math books for next year and in the package was also a CD that I had ordered because of a song i had heard on our local Christian radio station. I put the song on repeat as i did laundry and sobbed. God's timing is perfect. He knows the fear of a mother deep in worry, who feels "robbed" by illness. Just a timely reminder from God that we are not separated from Him, even in our sorrow, even in our worry, even in our work. He is in the middle of it with us. We belong to Him. Here are the lyrics...I also added it to my playlist.
Not angels,
nor demons,
no power on earth or heaven
Not distance,
nor danger,
no trouble now or ever
Nothing can take me from your great love
Forever this truth remains
I belong, I belong to you
I belong, I belong to you
Not hardship,
nor hunger,
no pain or depth of sorrow
Not weakness,
nor failure,
no broken dream or promise
Nothing can take me from your great love
Forever this truth remains
I belong, I belong to you
I belong, I belong to you...

Sadie update

Got this e-mail from Sadie's nurse this afternoon after wandering through the local greenhouses again in search of tomato cages... and that incredible smell of living things. Routine blood work has been done to ensure that her sodium/osmolality returns and remains within normal range during her introduction to the synthetic form of the anti-diuretic hormone. Mayo clinic results are in:

"Hi Jessica
I just tried calling but you are probably very busy. I hope you had a great time in Vancouver. How is Sadie? How are things going? So, the bloodwork from June 4th results were: sodium 141 (normal), and osmo of 289 (normal). We have received the blood work from California. The results are that the ADH (antidiuretic hormone levels) were detectable. Dr. M--- states that he can not fully explain why the ADH levels were undetectable previously. Dr. M---- states the history, investigations, and response to DDAVP seems consistent with "Partial central diabetes insipidus". In fact, the detectable ADH levels make more sense with the clinical picture of partial central diabetes insipidus. Dr. M--- suggests to continue with the twice daily DDAVP ... ________________________________"

We will have our follow-up appointment on the 19th. Thank you so much to those of you who are praying with us. It is a huge encouragement to *me* and I know to Sadie too.

(Nuclear) Family Reunion and Free-Falling

Just got back from the homeschooling conference. Really, it was more of a mini family reunion to me than a homeschooling event. The picture I wanted of all 5 of us (Mom, Dad, Steph, Paige and I) I didn't get. I did get one of Mom, Dad and one tiny representative from each of our families though and it's an interesting shot to me. Mom and Dad took turns "strollering" the babies to sleep and mom bought each little one a new outfit at the Sears sale across the road from the convention. Dad introduced and treated us all to the mouthwatering BEEF VINDALOO(?) at Moxie's. Such Herculean effort to dine out with 3 babies, one of whom was teething, but we did... more than once. :) mmmmmmmm..No cooking/cleaning, lots of eating! While we were sitting at Earls eating our last lunch out together the song "Free Fallin'" started to play. Not Tom Petty's version but John Mayer's new version. I know the song is about a philosophical bad boy...but when the chorus hit with it's repetitious "free fallin'" lyric, John Mayer was singing "my song". I've been telling Curt for months that as soon as all of these doctors appointments for Sadie are done with, we are going to run away to the bush together as a family. After this little recent trip out west I'm starting to realize that a quick getaway won't leave our problems in the dust, won't take the knots out of my spine, the ache out of my heart or the worry from my mind. The song "Free Fallin'" keeps resurfacing, so tonight I'm going to take captive that very attractive idea of just spiraling into a pit of "free-falling" despair and cling to what i know to be true:

"The Lord delights in the way of the man whose steps he has made firm; though he stumble, he will not fall, for the Lord upholds him with his hand." Psalm 37:23, 24

"Cast your cares on the Lord and he will sustain you; he will never let the righteous fall." Psalm 55:22

"I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God." Psalm 40:1,2,3

Nobody "Nose" the Trouble We've Seen

Night #3 of hormone replacement for Sadie and things are markedly improved. Still not perfect, but improved. The desperation has been replaced with "I LOVE YOU!"'s. Poor babe. The hormone wears off too soon so far and I'm pretty sure we will still need to be adjusting the dosage, but for now, we will wait and see if things will continue to improve as we ease into this new routine. She is not loving the method of blowing the hormone up her nose through a tiny tube... and we will have to work on that. In other news, Grannie and Gramps are here for a visit. Grampsie is famous for giving Sadie Tic Tacs when he comes and this time was no different. BUT! ON the way home from church this morning, Sadie slipped one of the tiny white mints up her right nostril to the far reaches of her brain never to be seen again! I sure hope she wasn't thinking about giving Mr. Vasopressin a little treat for working so hard up in the "pit"...then i think it could be firmly blamed on me for my storytelling! We tried tweezers, (she sniffed it up farther). Sucking, soaking, waiting... Not sure, but there was a lot of minty refreshing snot drizzling from her nose and i think it has most likely dissolved by now! (BROTHER!!) There is always something to shake your head at! Anyways, we shot the hormone up the other nostril and hopefully the minty mucosa will accept the hormone just as good as the old fashioned mucosa.

"Did Mr. Vasopressin come back?!!"

Before Curt took Sadie in to the Dr's yesterday we talked about how the Dr's had looked wayyyyyy into her blood and they looked at all the little hormone guys in there and everyone was there except for Mr. Vasopressin. He had run away! I told her that they were going to put Mr. Vasopressin back, but that they had to put him up her nose! ( the hormone is given nasally for little ones like Sadie) I told her that the Dr's were going to tell him to "Get back to WORK!!" and when Mr. Vasopressin went back to work she wouldn't be thirsty anymore. She giggled. "I'm not going to be thirsty anymore? *giggling* I love you mom!....*and then seriously* But can i have a drink?*" Her trial dose that day was a day's worth of deliverance from her constant desperation.
She ate
She drank
We were merry
and then it wore off...
We went into the Stollery today to see the endocrinologist and report back. Sadie had more blood work done. They will be re-doing the MRI in 6 months to look for tumors that may be too small to see right now. They are re-checking the level of hormones. We are starting her on the hormone that she is missing and will re-do blood on Tuesday and have a follow-up appt. in a month. Tonight, after we gave Sadie her first dose, I tucked her in and prayed with her. We were talking about "thirst" as usual and I told her that pretty soon she wouldn't be so thirsty. She perked right up. "Did Mr. Vasopressin come back??" :) Yes! and I'm looking forward to him getting to work in the "Pit" (-uitary) STAT!!

How the Day Unfolds

Sometimes the day unfolds and reveals trouble you weren't expecting. Some days, there is release and mercy. Today I found mercy. Instead of 2 days in the hospital non-stop, they broke it up for her. They ran tests today and then she came home. They sent blood work off to the Mayo Clinic in the States and did some of their own blood/urine work. They also gave her the anti-diuretic hormone she is missing and watched her all day to make sure that she wouldn't react to it. She ATE on the way home; four chicken nuggets in a row, without taking a drink!...or even asking for one. *makes me want to cry* For the past 2 1/2 months her eating has been getting worse. Swallowing anything even a little dry has been hard for her. She chooses favourite foods now according to the water content not taste. Desperation is common around here and my shirt is getting long from tugs for drinks. She *looks* different even since coming home. Her eyes have looked sunken to me for months. Her arms, legs, back have been bony. Not so right now. Her body is holding onto water instead of letting it all go. I weighed her and she was at 28 lbs...and happy... waiting and watching.

E-mailing God

As Curt and I were talking about the HUGE budge in the waiting game that came yesterday, i was reminded of an e-mail i sent out to my family the day before. Here's how it went:

"Sadie was super-beggy today. Frustrating as the no eating is as bad as the want to drink. I'm ready to go back to the Dr. but don't know where to go. They all will think we are crack-pots. She prays that she won't be thirsty and that she will eat and tells me over and over that when she sneaks it makes her feel bad. She told me at nap time that she loved going with auntie Stephie. (thanks for taking her for the day by the way!) :) and then brightened up huge and said "She gave me LOOOOOOTS of drinks!! haa haa! She carried on about the marshmallow milkshake and told me that Auntie Stephanie was funny because she wasn't ALLOWED to have ice cream. I'm tired. Wessie needs me too and so do the other kids. And Curt. So much of my day is a lesson in being patient...i wonder if i prayed for God to teach me patience at one point and this is His hilarious answer. if so, and i know You're listening... NOT funny and I promise to be more patient!!! Please release me from my request!"

I wrote it just like that, with the last part in bold, which is maybe what made me remember it the day after when the call came from the hospital that test results had come back suspicious. He sees, He hears... He even reads His e-mail....and He is a God of *mercy*. Sadie goes into the Stollery tomorrow at 7. Thankful that God providentially designed this week for my parents to be making a business trip to our house for the weekend. hmmm. When He answers prayer, He sees to every detail doesn't He?! It's all I can think about. My heart is lighter today despite Sadie's continued thirst and begging and our attempts to constantly distract and satisfy with ice chips and mini mr. freezies. The older kids took her out to watch the horses get shod until lunch. I'm thankful for my other children who are learning patience and mercy and grace and service and gentleness and self control and kindness and goodness in a very intense sort of way along with me. As my grandmother likes to say: "There isn't an ill wind that doesn't blow some good." She's right.

She is not forgotten

My Sadie...I thought we were to go on in this pain forever. I thought they had forgotten you. The Nephrologist we've been dealing with through the Stollery called today with results from testing. They have been talking to specialists all across the country about you... I thought they had moved on, leaving us in this struggle alone. They said your blood shows no ADH hormone... two times they tested. Twice the tests came back with no Anti-Diuretic hormone. It doesn't match up with other tests. MRI showed an ectopic pituitary as well. We will be speaking with endocrinologists as well... finally. They will admit you again, re-do tests. I'm sorry my honey... more pokes. *tears* So thankful that I've been patient with you despite your tantrums for BIG drinks. So thankful that I responded with love and hugs and kisses and a gentle response. So thankful. You are sleeping now, my little Sadie. I love you. So thankful you are remembered. , mama

The day after deprivation

Well, we made it through so many days of waiting only to be given another set of days to wait. Dr's visits begetting Dr's visits. Finally got in with the Nephrologist for Sadie, waited another 5 days for her "water deprivation test". By the time the test rolled around, she was drinking almost 7 litres of water/24 hours. We were up every hour of the night changing her and giving drinks as it continued on into the night. Morning diapers weighed in at 7 1/2 lbs. Sadie and I spent yesterday laying in the clinical investigations wing of the hospital. Curt, my hero of a husband came and brought Wesley. He looked after him all day at the hospital so that I could stay with Sadie and when Wes needed nursing, Curt brought him to me. I love that man. Curt's mom had all our other kids spend the day at her house making cinnamon buns and playing with cousins....I love her for that too. I brought Darren's DS with a "Dora Explorer" game borrowed from a friend, books and dollar store prizes to be chosen after each unpleasant test. That was my aunt and cousin's suggestion and it was a great tool to have on a day that was guaranteed to be a rough one. I carried her through the halls as we waited in between "checks", reminding her that i love her as i said "no" to repeated cries for water. We made scheduled and repeated trips to the washroom on the hour for samples of blood, urine, BP and weight. She lost 4 % of her body weight during the test (easy for a 28 lb 3 yr old to do) and her sodium was rising, something they were watching for. Suddenly it rose higher than their limit and the test was abruptly ended, last samples were taken and the anti-diuretic hormone was given to see what her reaction was to it....It was Diabetes Insipidus...Then the last results from the lab came back and the sodium was back to it's original number... high, but not at a level warranting stopping the test! They decided that the sudden jump in sodium in her blood work was probably due to the saline flush from her IV. So frustrating to have them screw up after such a long torturous day of it. Dr. decided that he needed to talk to the leading expert in Diabetes Insipidus, Dr. Bichet, who lives in Quebec regarding the results and in the meantime we were to cut her drinking down to 2litres/24 hours starting that day. WELL! We went home answer-less...She was parched and didn't want to eat on the way home. Only drink despite not having eaten anything all day. (The test had lasted from 3 am-2 pm.) I allowed about 4 cups total by the time bed rolled around and then explained to her that we were not going to give her drinks during the night. She said "I'm not thirsty anyways." !!! I haven't heard her say that ever. I tucked her into bed and she did not wake up for drinks even once. At 3 i woke her up to see if she could pee as i worried that she had drunk too much and if she couldn't pee it out (because of the hormone) it could be problems but she didn't have to go. At 7 am I pulled on some pants, coat, shoes and pulled my hair into a ponytail. I didn't wash my face, brush my hair or my teeth (This whole ordeal is encouraging some un-hygienic practices) got Sadie up, urine sample collected and went into the lab for more blood work. I was amazed with her reaction to the anti-diuretic hormone! My uneducated opinion is that she *is* concentrating her urine but just not *enough*. I think because she is losing too much fluid, she is getting thirsty. Around 11, her asking for water began again. She had only drunk 1 1/3rd cups of water, but 600mls plus the urine sample had escaped. Her drinking seems to be fuelled by her peeing. I guess we will see as time goes on. It is Easter so we won't get in to see the Nephrologist till next week when he has booked us in, but hopefully more will surface between now and then. In the meantime, it feels like God is just right here... silently watching and waiting with me. I recognize this "feeling". When Darren was diagnosed with epilepsy i remember feeling like God was present but He was silent. His silence annoyed me and made me angry. Somehow, this time around, His silent presence is peaceful and reassuring. It's an acute awareness that He sees my heart, He knows my thoughts...."...even before a word is on my lips, (He) knows it completely..." (psalm 139... again) The silence, to me, is God listening.

Dr. Vernon and Sadie

We're having a strange couple weeks with Sadie. First it was a lot of bed-wetting. She has been dry night and day for 4 months now and semi-good for 6 months. The bed wetting has intensified though, and it's a LOT. She's had a couple day time accidents too. She drinks cup after cup of water...she just came downstairs to get a full glass now, wearing a diaper that Curt must have put on her in the night after the 3rd sheet change. She doesn't just take a sip either. Her appetite has been up too. I got scared last night after she peed her bed for the 3rd time... (she peed it more than that by the end of the night) So looked up children and diabetes and those are the first main 3 symptoms. Wondering if i should take her in?...hoping it's a urinary tract infection, but with both of our family histories I'm nervous i guess...plus she doesn't have a fever or pain when she pees and i know that would indicate UTI. I tried the Dr. this morning and it was not open yet for appts. so decided to call Curt's Uncle Vern who has juvenile diabetes. He brought over his "clicker" this morning during school time, snuggled the kids, gave them a little instruction, and then asked Sadie if he could click her finger. She agreed with big smiles but then i accidentally said the word "poke". She looked at me with a nervous look and snatched her finger away from Vernon and his fancy "number maker". He felt terrible and didn't want to poke her but Curt said to just go for it so i snuggled her in and she cried and Vern reluctantly poked her little finger and tested it. 6.5... normal! (whew!) Sadie is still drinking cup after cup of water so i guess we'll just keep an eye on her. Before Vernon left, he showed the kids how he has to take needles in his tummy and Sadie softened for him. He gave her a toonie, snuggled the kids on the couch and told the kids stories and then headed off. After he left i told Sadie, "Next time Vernon comes, you need to say thanks for that toonie he gave you Sadie." She looked up at me shocked and with a little quaver in her voice said "Next Time!!? Next time I won't pee the bed!!" Haa haa! I'm relieved and yet hoping that the drinking/ peeing problems end soon. It's been 5 cups of water already this morning and it's only noon.