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    

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

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.

Sadie Update

Well, this will be short. The X-rays were clear! :) :)
I talked to Dr B (oncologist) this week and he reported that the x-rays were clear of any lesions and the previous lesion seen on the cat scan did *not* appear to be an LCH lesion. Because of the thickening of the pituitary, however, they will be keeping tabs on Sadie through her endocrinologist to make sure that the thickening is not the beginning of something more sinister. She will continue to have MRI's every 6 months, and she continues with her hormone replacement. Even though we are, in a way, back where we started at the beginning of this roller-coaster of "what-if's", I am THRILLED. :) No lesions, No biopsy, No medication. Just a watchful eye. If she complains of any consistent pain in any part of her body, we need to take her in as it could be LCH lesions.
There is something in me that is changing through this. I feel as though i am being systematically taught that no matter where this specific road leads... i am to *trust* God. I'm to *rest* in Him. The words "*abide* in Him" keep coming to mind. "Abide": to rest or dwell...to remain...to stand still for once, look him in the peaceful face, pay attention to Him alone...and to stop living in the torment of my worries. To live in His strength.
...i am weak, but He is strong. -j

Now you see it, now you don't.

Well, it was an interesting appointment today. We went to see Dr. B. about the results from the follow-up CAT and PET scans and blood work. Here is the simplest way to explain the appointment:

The blood work for tumour markers came back normal this time. :D
One of the scans for bone lesions was clear. (The one that was supposed to light up any lesions.)
The second scan showed a non-lit-up lesion on her scull on the left parietal section.
Dr. B. (oncologist/hematologist) decided to consult on the spot with a neuro-surgeon regarding a possible biopsy of the lesion to determine whether or not the lesion was LCH (langerhans cell histiocytosis) which is what they were looking for with the scans. He told us that if the neurosurgeon said it would be too invasive, then he had the option of doing a 6 week course of treatment. (There is no other way to diagnose LCH as it does not show up in the blood or anywhere else...so we would be treating on an educated "guess" without the biopsy.)
We waited for the neurosurgeon to weigh in.
He arrived, felt her scalp, looked at the scans and asked if she had complained of any pains.
We said no.
He said that he could not see any lesions on the scan that had supposedly shown a lesion, that he couldn't feel a lesion on Sadie's scalp and that since she is presenting with no other symptoms besides DI, he would not recommend a biopsy.
He then ordered some good old fashioned X-rays to confirm whether or not there was a lesion where the other scan seemed to suggest.
He doubts it.
I do too at this point.
Dr. B. gave us the paperwork and told us he would call us with the results later on today and we went downstairs and got the x-rays done.
Now again...we wait.
It won't feel like this leg of the journey is over until Dr. B. says we don't have to ever see him again. So i'm holding myself back from going crazy with glee... and at the same time.
:D
This sure feels like a fantastic answer to prayer.
grateful.

Disco music to the rescue

I took my first foray into the real world again on Friday by heading into fiddle lessons in the city with all 7 kids in the 12 passenger van. We were going to pick up Curt on the way (thank goodness). I remember the first time leaving the house alone with all 6 kids after Wesley's birth. Those first tentative trips out of the house and towards normalcy are always so memorable and momentous for me...and a little frightening. Curt's cousin had given me a kids karaoke CD and as we turned out of the driveway and onto the road, i shoved it into the player without looking at the song contents. Suddenly, the first few bars of a song i have heard often blared into the van and i simultaneously burst into tears and laughter. Tears, because the theme and main lyric of the disco song "I Will Survive" seemed appropriate for the weeks worth of bobbing and drowning in the sea of worry (even though the song doesn't really apply any deeper than those 3 title words)... and laughter because the tears were so melodramatic. Besides, who listens to disco music with a straight face? I'm sorry, but only if you're dead is that possible. The van burst out in a wild frenzy of disco dancing and laughing. Ah! NORMALCY. :)



*Update on Sadie*

Just got a call from the hospital. Sadie will be going in for her CAT and PET scans at 8 am on October 21st. It's farther away than we thought but at least the date is set. A friend sent over meals this week and then the church sent me home with a box of frozen meals. So thankful.

sadie update

Today was the appointment with Dr. B. the Oncologist/Hematologist. We waited almost 2 hours to get in with him. Sadie had a great time waiting as there was a little area with books, toys, art and a full-time art teacher and other children to play with. I saw her smile at the little girl across the table as they painted together and then i saw her face change to a question mark as she noticed that one of the little girls' eyes had been operated on and disfigured. I don't think she noticed that the one little boy had a bandage around his neck, one girl limped and jumped from place to place, and another little girl sounded like her voice-box had been altered. She just played. For me...every little detail was taken in. It was impossible, even with the highly positive people, murals and energy around us, to ignore the reality of where we were waiting. The tiles on the walls made by children and their families who were battling cancer, the newspaper clippings on the walls about how the sound of a mother's voice has been proven scientifically to release hormones/chemicals that soothe and heal, how the house across the hospital was recently been opened to accommodate families waiting on blood tests, a bald teenage boy being measured and weighed in the hall, a stylish looking teenage girl with her mom limping out of the exam room, big smile on her face. I looked over at Sadie's blond hair like a halo around her own beaming smile as she twirled her paintbrush on the paper plate. She doesn't belong here....does she?? Sadie flew out of the art station with a paper airplane and threw it down the hall to cheers from the art teacher and spent the next 15 minutes throwing it back and forth to Curt while i nursed a fussing Eva.

Finally we were called in.
The verdict.

There were 2 tumour markers that were checked along with the blood work: HCG and Alphafetoprotein. The HCG was normal but the AFP was right at the cut-off. (9) Dr B said that even so, if it were a germ cell tumour, the number would probably be much higher (1000!) because they grow so fast. He will be booking Sadie for a CAT and a PET scan and more blood work within a week or two and said that he would try to book them at the same time so that she would not have to be put to sleep twice. They would inject a low dose of radioactive dye before the tests which would illuminate any bone lesions (associated with LCH). He said that she may have LCH existing only in the pituitary, but to determine that, he would need to eliminate other options. With Sadie being so healthy otherwise, there is no reason to put her through the agony of a biopsy to determine this. If it is only in the pituitary, and not causing other endocrine problems, he would just monitor it closely for growth or change as treatment is usually to keep the child from developing DI... and Sadie already has that. All in all, it was a fairly encouraging appointment. So, i guess the short story is that we will be undergoing more tests. ...just noticed i said "we"... If you are praying with us, you are included in that "we".
James 1:2-8 comes to mind, so here it is in a "Message Bible" paraphrase:

"Consider it a sheer gift, friends, when tests and challenges come at you from all sides.

You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely.

Let it do its work so you become mature and well-developed, not deficient in any way.
If you don't know what you're doing, pray to the Father.

He loves to help. You'll get his help, and won't be condescended to when you ask for it.

Ask boldly, believingly, without a second thought. People who "worry their prayers" are like wind-whipped waves.

Sadie's appointment/ blood work

Sadie's nurse called today to make sure that we had gotten appointments with the hematologist/oncologist and to let me know about the blood work. We do have a one hour appointment for this Monday morning with hematology/oncology. As far as the blood work, she said that so far, everything that had come in looked good. :) She said that they had checked two "tumour markers" and one looked good and the other hadn't come in yet. I was determined to get my home school schedule hammered out for certain last night but got caught up searching the Internet making sure i knew what to ask in the appointment on Monday. Really hoping for more of "nothing".

In an e-mail to my family this week i wrote: "I feel like i did when Sadie was born and Darren was diagnosed with epilepsy that same night...trapped between Joy and Dread. And then there is His face again. Catching my eye across the crowded room...no words, but He sees me.

On the side of Joy today was my friend Andrea. She came and took baby pictures of my little Eva. I can't wait to see what her artist-eye captured for me. Thank you so much Andrea. -j

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"

MRI results

Sadie's MRI results came in and they did not find a tumour! I'm overjoyed, and at the same time frustrated that I may not get *any* answers as to why her diabetes insipidus began in the first place. She has to go for two more sets of blood work to check her levels of blood osmolality and sodium to make sure her increased dose of dDavp is still good. They are also going to check her level of oxytocin this time which is new. The next step is genetic testing. Blood will need to be sent to Europe. Not sure when they will do that as her endocrinologist is pursuing a grant for that one.

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.

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.