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. 

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.

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