gratitude not guilt

One day, years ago we attended a pool party for the church. Someone in the church had rented out the entire facility so that it was free for all of us. When one of our friends found out that none of us had to pay, he announced "Wow! I feel blessed!" He was sincere but it struck me funny at the time and his statement became a little bit of a family joke. When someone would do something nice for another person in our family we would laugh and say "Wow! I feel blessed!!" I'm understanding why it struck me so funny that day and i think part of it was my own immaturity. Accepting help, or kindness has never been a forte for me. The spectre of *Guilt* following me around has always been too much of a risk. Maybe part of it is fear of criticism for taking the help or maybe it's pride on my part (that i can *do* what needs to get done on my own without help)? These past few weeks have been humbling though and i found myself saying "yes" when people offered to bring meals or babysit, or clean. My oldest daughter has been coming into my room every morning for almost 4 weeks straight now asking if she can take the baby and give me an extra hour of sleep. I'm learning to say "thanks" and "I feel blessed." And it's not that funny anymore.
It's profound.
So many people have said that they've been praying for Sadie and for us. I am at peace when i think of her situation... and find joy in thinking of the year ahead of us as a family. So thankful...so blessed.

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.

Sister love

I was snuggling Eva and staring at her sweet 2 1/2 week-old alert face when Sadie crawled up next to us on the bed and started stroking Eva's cheek and kissing her.
"Awwwwwwe, your big googly eyes are so cute!"
I burst out laughing which frightened Eva to wild tears and Sadie had to scold me "Mom! Don't laugh at her!" :)

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"