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