An illness in pictures

Amy's last healthy day, October 8th - her first of three 3rd birthday parties!

Amy just post tonsillectomy. A little wan, a little thin and pale. Enjoying stories with Grandpa.

Siblings find something fun to do while Amy spent another day at the clinic being evaluated on October 22nd in Eau Claire. They visited Auntie Melissa's museum.

Third day at the Children's Hospital, October 29. Neurologists do one final assessment before Amelia goes down for sedation for a 2nd spinal tap.

Sisters peeking through the window before Amy goes down to the operating room. Family comforts Amelia inside the room. I have a distinct memory of this same experience when my brother Ben nearly died of pneumonia just after he was born. I still remember the ridges painted on the glass, how they felt beneath my fingers.

Happy to see us, even under the circumstances. Katy is concerned.

Grandma Nel enjoys a snuggle with Amelia before she goes to the operating room on October 29.

A moment of joy for Caleb when Kelley Downie met us in the lobby. I think we are all missing our home and our friends there!

The girls trick-or-treating at the children's CT/MRI unit. They were pretty excited about the "fairy door".

Katy was tired and concerned about her sister here, I think. The Child & Family Life Halloween party in the family lounge on October 30.

Amelia in costume #2 of October 30 - the official Halloween party day in the hospital. Her esotropia strabismus (right eye deviating toward the nose) began to be apparent on this afternoon. Most of her other issues are not visible in the photographs.

Nothing heals like cuddles.

...and stories from your uncle...

...and playtime with your auntie...

The "home" kids (as they call themselves) trick-or-treat in Auntie Rosalie & Uncle Dennis' neighborhood on Halloween.

Finally, a hug from Caleb! Since the cultures are coming back clear, we allowed the kids to visit in the room (!!) today to get some cuddles with their sister. On Monday, no children under 5 will be allowed through the hospital doors unless they need treatment. Another visit may be in order tomorrow.

And this is how I spent this evening. I had to go to the ER to be evaluated for bleeding. My ultrasound didn't find any baby, and the bleeding continues. This may just be early pregnancy break-through bleeding, and the baby may still be "invisible" due to size. I may also be miscarrying. I guess I'll just leave it at that. I am praying for a healthy baby. And God's will be done, however bad it hurts.

When I saw the break of day
I wished that I could fly away
Instead of kneeling in the sand
Catching teardrops in my hand
~ Don't Know Why, Norah Jones ~

*thanks, Grandma Debra, for all the photos.

Back up the hill on this rollercoaster

For this reason the argument which is always forthcoming to silence those who conceive extraordinary hopes of man, namely the appeal to experience, is for ever invalid and vain. A mightier hope abolishes despair. We give up the past to the objector, and yet we hope. He must explain this hope. We grant that human life is mean, but how did we find out that it was mean? What is the ground of this uneasiness of ours; of this old discontent? What is the universal sense of want and ignorance, but the fine innuendo by which the great soul makes it enormous claim? Why do men feel that the natural history of man has never been written, but always he is leaving behind what you have said of him, and it becomes old, and books of metaphysics worthless? The philosophy of six thousand years has not searched the chambers and magazines of the soul. In its experiments there has always remained, in the last analysis, a residuum it could not resolve. Man is a stream whose source is hidden. Always our being is descending into us from we know not whence. The most exact calculator has no prescience that somewhat incalculable may not baulk the very next moment. I am constrained every moment to acknowledge a higher origin for events than the will I call mine. ~ Ralph Waldo Emerson, The Over-Soul, 1841

...your eyes saw Amelia's unformed body.
All the days ordained for Amelia
were written in your book
before one of them came to be.
~ Psalm 119:16 ~

Between 9 and 10 a.m. this morning, Amelia began improving again. Her irritability, leg stiffness, neck and back pain, and light sensitivity began to fade. By about 11 a.m., she was back to roughly the same level she was at yesterday. As you can see from the photos, she enjoyed a short game of Candyland with Uncle Nick and Auntie Sarah. She also ate some lunch, and sat up reading books and playing with toys with various other relatives. Her right eye continues to be crossed almost all the time now, although the eye twitching is improved. This is somewhat concerning because the crossing of the eye indicates the involvement of a different cranial (brain) nerve than the eye twitching did. She continues to be easily overstimulated, more tired than usual, and kind of "shuts down" when anything changes in her physical environment. She did take some steps holding on to our hands today, but is still very uncertain about her balance, tipping backwards and having trouble getting her body to go forward instead of stumbling backward. Her gait seems about the same as it has been since Tuesday, in my motherly opinion.

Her lab work shows an elevated white blood cell count still today, still with the left shift that indicates a bacterial infection. Her spinal fluid has come back negative for a variety of other viral genetic tests, but still shows an active meningitis pattern, according to the neurology team. We had several doctors spend an hour and a half or so in our room, observing Amelia and allowing her time to warm up to them before continuing their assessments. I feel like today is the first time she has given her two main doctors (pediatrics and neurology) a real idea of what she is capable of and where her deficits lie. They both feel that her deterioation throughout the night was due to lying down, which can increase the intracranial pressure. We will try keeping the head of the bed elevated tonight and see if that makes a difference in her nightime status. They are watching her very closely for any signs of worsening intracranial pressure or infection, as they have now stopped her antibiotics and may consider stopping her antiviral as well if it is not making any significant improvement in her lab work or her neurologic deficits.

So, mostly good news for the moment! I apologize for dragging you onto this rollercoaster with us...feel free to get off at any time! We wish we could!

Overnight deterioration

As we were warned, Amelia has started to deteriorate again as her spinal fluid builds up the pressure around her brain. Overnight, she became combative and her pain level has notched up all night long. She resists diaper changes and position changes because of her back, leg, neck and head pain. She has become extremely light sensitive, and screams in pain and thrashes when they try to check her pupils or eye movements, prying her eyes open. Now this morning she is vomiting again. It is excruciating to watch, as this is exactly how I woke up on Tuesday. It is so hard that we haven't made any progress yet...toward knowing what the bug is, or improving her condition. I am scared. (What time I am afraid, I will trust in Thee.)

The plan for today is a sedated MRI and possibly a line placement (a more permanent IV instead of the temporary one in her hand) while she is under. I am not sure what other tests might be ordered, or if they will attempt to drain off more fluid. I know she will probably buy that ICU bed pretty soon if she doesn't improve quickly. (Trust in the Lord with all thine heart, and lean not unto thine own understanding. In all thy ways, acknowledge Him, and He shall direct they paths.)

Still frame in rushing water

I shall know why, when time is over,
And I have ceased to wonder why;
Christ will explain each separate anguish

And I, for wonder at his woe,
I shall forget the drop of anguish,
That scalds me now, that scalds me now.

~ from Emily Dickinson's Time & Eternity, 1926 ~

It was a golden, crisp autumn afternoon: October 8th, the last day I remember Amelia healthy in the recent past. We went to the park to play Pooh sticks off the bridge I used to walk as a child. Today has been a tough day. I think the stress is starting to hit home a bit. I feel like I am spinning wheels when I am doing anything other than tending to, absorbing, or cuddling my children - any of the four of them. And unfortunately, I can't have all four together in one room due to the unknown origin of Amelia's infection (she is in droplet isolation). That means wherever I am, I am not sure if that is where I am supposed to be. When I am with the "home" group of kids - Katy, Rosy & Cal - I feel like I should be at the hospital, and when I am at the hospital, I feel like I should be home. And I won't even mention the actual, real, physical home...abandoned until who knows when! I am thanking God already for the group of friends who is going to clean it tomorrow. I can only imagine how it smells after nearly a week sitting vacant, abandoned under duress with laundry in piles, diapers still in pails, bathrooms uncleaned, and garbage fermenting in the trash cans. Wait - perhaps I should quit describing it until my team has had a chance to go clean it - I don't want to scare them off!! What friends.

Regardless, here I sit. Surrounded by the familiar but nevertheless disturbing cacophony of the hospital. Being a nurse is a distinct disadvantage for me in this environment: I trained myself all too well to hear every code alarm, every urgent page, every IV pump beep, every peep from an unhappy baby in a distant room, every unexpected closing of a room door, every crash, bump, and thump. That means I spend my nights virtually sleepless, and my days permanently on edge. If only I could just go out there and work, I'm pretty sure I would feel much better! As it stands, I'm not even allowed to touch my kid's IV, or her beeping alarms, or the dirty linens. I even get an occasional odd look when I empty the commode, and definitely when I weigh and record a wet diaper. Apparently they don't get too many parent/nurse combos up here.

As I prayed, read, and caught up on the world at my computer tonight, these images came to mind. The fallen leaves frozen in the frame, the stream rushing by without regard. I am crystallized at the bottom of the torrent, plastered to the cold rocks of circumstance, clinging to a Rock that promises He is greater than I. Life, death, disease, the torrent that rushes by, pulling at my edges and threatening to send me spinning in a sea I am paralyzed by, terrified to navigate. I don't want to feel the tug. I want to remain plastered here, frozen in a moment of time, resisting this change. I want "today" to always be - Amy improving, keeping all the balls I'm juggling in the air. I fear the crashing down, I even fear resuming life at home with a new reality. I am just beginning to accept that "new reality" must now include a child with neurological deficits for an unknown period of time, possibly with an indwelling catheter, possibly trips to the hospital for I.V. drugs for weeks or months. I don't want to hear truth as it goes rushing past me, spewing from the lips of three teams of doctors, countless nurses, therapists, aides...I don't want to hear words like "damage might be permanent", or "at least it's a better mortality rate", or "improvement is probably temporary". On the other hand, I don't want to stand at the top of this new flight of stairs ignoring the fact that there are stairs in front of me. I know I can't do that type of crash, either. I want to fall slowly into this, one step down at a time. I can't fall down the entire flight at once because I refuse to hear scary details. So I'm trying to find the sweet spot between optimism and despair, anguish and hope. I'll never forget the feeling in my chest this morning when I woke up. A million times worse than waking up with cancer in your own neck is waking up with a child that might be dying. While I slept, Christ did, indeed, carry my burden. When I woke, it took about one full minute for me to remember what life was yesterday. And in that moment, the pressure built in my chest, all the way back up to that deep, penetrating, emotional pain of the heart that parents must endure as a consequence of the intensity of love.

So here they are, falling down beneath my cautious feet. Steps leading down into reality. I can't see the bottom yet, but I dare not close my eyes to avoid seeing it. I don't know these stairs. I've seen others walk them, but I don't know them with my own feet, know their height and depth with my own experience. So I have to keep my eyes open this time, and take the pain as it comes. Little doses or big.

I rise before dawn and cry for help; I have put my hope in your word. My eyes stay open through the watches of the night, that I may meditate on your promises. Hear my voice in accordance with your love; preserve Amelia's life, O Lord, according to your laws. Psalm 119:147-149

Details from tests

I wrote at length of affairs of my spirit and heart, realizing I forgot the details. To hear how I'm doing, read the previous post. Here's the details of Amy's day from a clinical perspective.

Amy's spinal fluid came back with a similar white blood cell count (infection marker) as it showed on Tuesday. However, it now shows a predominantly viral pattern, while Tuesday's test was more inconclusive, showing some patterns consistent with bacterial infection and some consistent with viral. In that sense, the picture has cleared a bit.

Amy's spinal fluid is negative for swine flu (H1N1) and herpes simplex virus (one of the most fatal - but most treatable - options, the virus that causes cold sores). These can be false negatives, so Amy will continue to be treated until the 3 week cultures come out clean for these bugs regardless of early negative test results. We are now praying hard that the early tests will show an exact cause, and praying that it will not be something that traveled from her stomach or intestines, as those tend to be the most untreatable and the most fatal.

Amy's nasal cultures were negative for respiratory syncytial virus and all types of influenza. Her urine cultures are negative, as well as her throat culture for strep throat. She still does not have a fever, remains on triple antibiotics and the antiviral treatment.

Amy has continued to have lots of energy today, sitting a lot during the day and even taking some steps while holding hands with us, from her potty chair to her bed. She continues to have significant tremors, especially when she is trying to do something with her hands. Her eyes are still showing some mild jerking, and this evening, her left eye started crossing to the middle whenever she tried focusing on something in front of her (near or far). Her pupils still look great, and her strength is still great in her arms and legs. She continues to have some abnormal posture, arching her back while lying down, and keeping her feet stiff at all times, toes curled under. I started some passive range of motion with her in bed yesterday and have continued doing that every few hours to maintain her flexibility (hopefully). We also started doing some fine and gross motor therapy in the form of action songs in bed! She loves that and it is a great chance to help her maintain her current level of function.

Lastly, Amy's vital signs have been a bit more concerning tonight. Her blood pressure is fluctuating a lot, from on the lower end of normal to quite high for her age. This can be an early sign of changing intracranial (skull) pressure, so that is something to pray about. She has also had a much more rapid heartrate, which can be an early sign of distress. Her heart rate while sleeping is now in the 140's. It had been in the 70's-80's for several nights. So that is something to pray about as well.

That's it! The only other news is that she ate like a champ today (a good sign) and pooped, too! I'm sure you wanted to know that!

More improvements

Amelia has sat up for quite some time today. She is still arching her back somewhat, and as you can see in this photo, her eyes don't track quite right nor are all of her facial expressions symmetric. However, things seem to be going in the right direction for now. Her antibiotics have been restarted because there is still uncertainty about the source of the infection. Haemophilus B influenza and one other common bacteria latex assays (rapid screening tests) came back negative in her spinal fluid. Her spinal fluid is showing no neutrophils now (markers of bacterial infection); neutrophils were present in her previous spinal tap from Tuesday. However, there are more cells indicating viral infection now than there were then. There is some question whether they have effectively been treating the bacterial infection, and the viral infection is just now becoming more apparent and more aggressive as there is less competition for nutrients. Two of the three teams of doctors feel her improvements are from the lowering of her intracranial pressure (pressure around the brain) due to the drawing off of some excess fluid during the spinal tap. They are hopeful that the antiviral medications will begin to lower the inflammation in her brain by the time the fluid has time to build up again (2-3 days). Unfortunately, that means we won't know for 2-3 days whether her improvements are "actual" improvements, or just related to the spinal tap and therefore temporary. We'll take what we can get! A kid who can smile, talk and sit is a far cry from one in a stupor, lying flat on a bed!

Here's a picture of what motivated Amelia to sit up in bed this morning! She got some much-longed-for visitors for the kids Halloween party on the pediatric unit today. Katy is dressed as Robin Hood, Rosy is Maid Marian, and Caleb is Friar Tuck. As you can see, Amy is a bee - I'm not sure how that fits their theme, but the kids have it worked out somehow! The girls were pretty pleased to see their sister sitting up in bed smiling at them, as you can see by the ecstasy in their faces!

We are so grateful for this reprieve. Please pray that the antiviral medications will kick in quickly and we will see real improvements starting next week. Amelia will begin physical and occupational therapy early next week to start working on her posture, eye movements, and hand-eye coordination. They are also considering speech therapy, as she gets very shaky and frustrated when she can't find the right word, and is still substituting letters and mixing up words in sentences. They are also talking about putting in a PICC line, which they will do today or tomorrow if any of the genetic tests of her spinal fluid come back positive.

Praise for small improvements

Amelia in a brief moment of improvement last week.

After her spinal tap yesterday, Amelia did better for a few hours. Her mood was improved, she was more talkative, and she even sat up once on her own. Her walking seemed about the same. She is still making some speech errors, like substituting the wrong letter at the beginning of words, and mixing words up in sentences from time to time. She also occasionally says something random and totally out of context. We were grateful that she spoke enough to us last night that we could identify some of these speech errors, as she has been mostly silent since Monday. The doctors feel she probably improved because the excess fluid around her brain that was causing the pressure to be high was drained off during the spinal tap. However, it is also possible the antiviral medication is already having some effect, which would be an excellent sign for long-term prognosis.

I found some encouragement in a little book called The Mother's Topical Bible this morning:

Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted. But he was wounded for our transgressions, he was bruised for out iniquities: the chastisement of our peace was upon him; and with his stripes we are healed. Isaiah 53:4-5

And the prayer of faith shall save the sick, and the Lord shall raise him up; and if he have committed sins, they shall be forgiven him. Confess your faults one to another, and pray for one another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much. James 5:13-16

Crashing down

When the rain comes it seems that everyone has
gone away
When the night falls you wonder if you shouldn't
find someplace
To run and hide
Escape the pain
But hiding's such a lonely thing to do
I can't stop the rain
From falling down on you again
I can't stop the rain
But I will hold you 'til it goes away
When the rain comes
you blame it on the things that
you have done
When the storm fades
you know that rain must fall
on everyone
Rest awhile
it'll be alright
No one loves you like I do
When the rain comes
I will hold you
~ When the Rain Comes, Third Day

Amelia was diagnosed "empirically" (without laboratory evidence) with viral encephalitis today. A new team of doctors was added, the infectious disease specialists. The lead doctor of this team seems to be channeling a slightly kinder version of Dr. House, which we consider a good thing at this point in the journey. He strongly suspects herpes simplex virus or varicella, the viruses that most commonly cause cold sores and chickenpox. There is a 30-75% mortality rate if it is herpes simplex. The mortality rate is higher the longer it takes to diagnose this disease. Amelia has been showing symptoms for 7 days prior to diagnosis.

If I could, I would spill some emotion into this. But I really don't have any more spilling in me. I learned this while alone at the hospital with Amelia, and it was all I could do to hold myself in from splitting in two until someone could come hold me while I cried. I have a lot of questions. I don't understand yet where God will extract glory from this situation. It feels like my worst fears coming true. Here I am, back at the Children's Hospital where I watched hundreds of sweet children die, trusting those same doctors to tend to my most precious possession. My child. My child on the bed. My child getting sedation. My child possibly needing a central line. My child with increased intracranial pressure. My child needing an occupational therapy referral...if she is still alive to get one. It aches. Deep.

We're here for the long haul. The doctors are now talking in terms of weeks instead of days. Please keep offering your prayers to the Mercy Seat. I beg minute by minute for mercy. Healing. Peace. Relief.

I cried unto God with my voice,
even unto God with my voice;
and he gave ear unto me.
In the day of my trouble I sought the Lord:
my soul refused to be comforted.
I remembered God, and was troubled:
I complained, and my spirit was overwhelmed.
Thou holdest mine eyes waking:
I am so troubled that I cannot speak.
I have considered the days of old,
the years of ancient times.
I call to remembrance my song in the night:
I commune with mine own heart:
and my spirit made diligent search.
Will the Lord cast off for ever?
And will he be favorable no more?
Is his mercy clean gone for ever?
Hath God forgotten to be gracious?
Hath he in anger shut up his tender mercies?
And I said, This is my infirmity:
but I will remember the years of the right hand of the Most High.
I will remember the works of the LORD:
surely I will remember thy wonders of old.
I will meditate also of all thy work,
and talk of thy doings.
Thy way, O God, is in the sanctuary:
who is so great a God as our God?
Thou art the God that doest wonders:
~ Psalm 77 excerpted ~

La troisième fille

Amelia is resting peacefully tonight after we tweaked the way her medications are given to her throughout the day. She reacts to her antibiotics, and she also gets very agitated with the medications they give her to prevent the reaction. Giving them very, very slowly seems to be the ticket...but it's difficult to talk busy nurses into doing it that way! We have a great nurse tonight, and Amy is doing better because of it.

Amy saw 19 different doctors today, and had 26 visits to her room from nurses. That's a lot of people in and out! Tomorrow I am hoping to keep visitors minimal so that she can rest and recover. She seems to be much less overwhelmed with 1-on-1 attention, and can actually converse and do fun things like paint (although the coordination issues are still a problem). Like many people with brain problems, she is easily overstimulated and has difficult performing optimally when rushed or sensing failure to meet expectations. I am hoping to optimize her recovery by providing lots of calm, quiet opportunities for her to use her fine and gross motor skills in a less chaotic setting. I bought her some fun toys and games today and look forward to getting a chance to do more of that and less cartoon watching tomorrow!

From a medical perspective, she is continuing to be about the same. We did have one piece of excellent news: her white blood cell count and other lab work that indicates her bacterial infection level all improved on the antibiotics. The team of doctors feel she is fighting both a viral and bacterial infection, which makes her care a bit more complex. Amelia is still more alert than yesterday. She has developed worsening nystagmus (eye twitching) that is interfering with her ability to focus or track objects with her eyes. She has also developed a tremor in her arms and hands, head and neck. She is tremoring a bit even in her legs as she is sleeping now. Her neurological exam showed hyperreflexia (increased reflex and twitching activity) and ataxia (lack of coordination) as well as poor hand-eye coordination. So far her intellect and speech are unaffected. As a mother, this detail is so important to me. While I shudder to think of having to help my dear, perfectly formed daughter work through physical and occupational therapy to learn to walk again - a definite possibility as the days pass without progress - it is like water to my soul that God has spared her, those parts that make her most unique, beloved, and beautiful to me. Her humor, her nuances of interaction with others, the way she puts words together...those are the most important parts of Amelia Irene to me. So thank you, Lord, for sparing those through this difficult illness.

Seeing her in pain is heart-wrenching. When her back, neck and head pain make her arch, posture, and scream every time I lift her to take her to the bathroom, it is like a beautiful vase hitting the floor, shattering everywhere. So hard to endure, for everyone in the room. I am grateful she is finally in a hospital and able to rest and receive fluids by the I.V. so that she is not constantly in pain and distress. What a blessing.

At 9 p.m., Amy and I had a few minutes alone and watched some of the Wild game. This made me giggle, as my dad was with me in the hospital when I was little, after a fall from a tree house. He made me watch the World Series with cartoons! I was pretty disappointed. So tonight I nixed the cartoons (trust me, she watched plenty of Dora and Clifford earlier!) and we watched hockey. She began talking to me, more than a few syllables for the first time in many days. I caught some of it on video so all of you who read and pray and love could be reassured that she is still Amy! I hope you enjoy. I think some of the shakiness, eye jerking, and lack of coordination is somewhat visible, but it's not too bad.

Amy back in the hospital

You are my hiding place
You always fill my heart
With songs of deliverance
Whenever I am afraid
I will trust in You

I will trust in You
Let the weak say
I am strong
In the strength of the Lord
~ Selah, You are My Hiding Place

A quick note to say joy turned to anxious prayer through last night and this morning. Amelia took a turn for the worse, waking up vomiting, unable to sit or stand without help, and with a symptom called nystagmus, an ominous sign of neurological problems. We were visiting family in Minneapolis, so rushed to the place Aaron and I met...University of Minnesota Children's Hospital. After several tests, including a spinal tap, she was diagnosed with meningitis, probably bacterial. She is in isolation and getting triple antibiotics to treat the infection. She immediately improved somewhat, so we are hopeful this will truly cure her of the illness she has been fighting for three weeks. She will see a neurology team tomorrow to continue to evaluate her condition and the origin of the infection. Please keep her health in your prayers, our sanity in your prayers, and wisdom of doctors in your prayers. Also please keep the baby and I in your prayers, as this will delay the diagnostic tests to determine whether the baby is growing in the right place or not.

Miraculous, unbounded kindness

Less than 0.05% of women get pregnant in the first 18 months following a tubal ligation, permanent female sterilization. The surgery I had in late May, 2008. I'm guessing very few of those 5 women in every 10,000 underwent cancer treatment in the same 18 month interval. I knew before I took the test, this was one miracle that was going to knock my socks off, knock me right off my feet, most likely. After weeks of waiting in vain for a sign that I wasn't pregnant, I finally caved and took a home pregnancy test at 4 this morning. And I stood, staring at the two pink lines, thinking, "God, I can't believe you sometimes! I just can't believe this! I can't believe this!"

Less than 30 days ago, as I pondered the upcoming adoptions some friends are undertaking alongside our own stalemate on the adoption front, I sat down and poured my heart out to God. I don't feel ready to be done having children, I told Him. I have unhealed wounds from weaning Caleb so early, from getting the tubal without much time to ponder where I was at emotionally, spiritually, physically. I feel like I need another chance to finish this part of my life. I know it might be grief...cancer grief, to be specific. I am just telling you the desires of my heart. This is my desire. In Your time, please send me another child. At first I didn't think at all of the possibility of becoming pregnant again...not until my cycle was a few days late. Then I started to wonder, but it was just a passing inquisitiveness, not really founded in any realistic expectation.

And then another week passed. And another. And I did start to wonder. Not enough to destroy the element of shock and surprise when that second pink line showed up on the test strip this morning at 4 a.m.! Too excited to sleep, I went to the kitchen for a snack and some reflection on how my life just did a 180...again! Katy found me in the kitchen, sat on my lap, shared in my ecstatic, exuberant, disbelieving joy. What fun to share that news with your oldest in the middle of the night. Neither of us slept much more. I repeated the test at 7, and left the stick and a note for Aaron on the vanity (quite a far cry from the "baby" themed feast I made for him to announce Caleb's impending arrival! After baby spinach, baby carrots, baby dill pickles, baby back ribs, and baby red potatoes...he still didn't get it! I figured I'd go for obvious this time around). A few dozen celebratory phone calls, and I still haven't come down. It's the giddiest news I've ever gotten!

More concrete proof in my life story that God is here...and He is listening, and loving, and lavishing.

There are consequences, choices to be made as usual. When you're still not out of that active cancer phase, nothing is uncomplicated. To further cloud the joy (as if anything could cloud it on this happy day!) is the specter of ectopic, or tubal, pregnancy. I am at increased risk. Please keep my Wednesday ultrasound in your prayers...please keep my baby and my own body in your prayers! And remember to offer up praise, for our God is an awesome God, and He heaven and here, in infertile and scarred bodies offered up as offerings of worship to His throne. (Listen to this passage heard first in Nehemiah 1 and echoed in chapter 9, set to music here by Hillsong United)

Emerging from the shadows

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I’m caught in the middle of the storms of this life
I won’t turn back
I know You are near

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We’ll live to know You here on the earth
~ You Never Let Go, Matt Redman ~

The long trial seems to be over. For the moment, at least! I feel like I lost all of September and October to sickness. Amelia started eating yesterday evening, and her energy is improving every time she takes a bite. She is still running a bit of a fever today, and took 3 naps instead of her usual 1, but she is markedly better. Which is great...we were on the verge of heading off to the Cities to a Children's Hospital if she continued to be so sick. Her white blood cell count and platelet count were still high yesterday. Both are signs of a raging infection. The latest hypothesis is that she had H1N1 influenza prior to having surgery, and didn't recuperate well because the surgery further depressed her already-overloaded immune system. However, the doctor opted not to test her for H1N1 as she was far beyond the help of antiviral treatments by the time we brought her in, and the test is only 10-70% accurate anyway.

Thanks for your prayers. School is still stressing me out, as I got horribly behind this week due to the many longs days at the doctor and hospital. I am hoping to catch up over the weekend, but all mothers know that when a sick child starts to get better, the work is really just beginning. I spent the majority of my day holding Amy, reading her stories, and getting her snacks. I went from nurse to nursemaid! I am enjoying the chance to tend to her needs, but didn't get much else done beyond childcare today. I guess I'll have to remain flexible about getting my other tasks done!

And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. (II Corinthians 12:9 KJV)

Easy, fun ways to prevent cancer

As a cancer patient/survivor, I am passionate about telling people about cancer and how to prevent it. I thought I would summarize in a few quick bullet points. Please go down the checklist and make sure you are maximizing your chances of catching cancer early by checking your own body for signs of changes. You can find more resources about screening services available through your medical doctor here. Lastly, to assess your own cancer-specific risk, fill out this simple screening tool and read up about the cancers you may be most at risk for.

  • Thyroid cancer is the most rapidly increasing cancer in women in the U.S. Your thyroid gland should be felt by a skilled care provider at least once a year. You should also perform a monthly neck self-exam along with your monthly breast or testicular self-exam. For instructions and a downloadable card to place on your bathroom mirror, click here.
  • To prevent thyroid cancer, avoid using iodized salt if you eat plenty of store-bought canned food and salty foods like soy sauce, store-bought condiments, and cured meats. Excess iodine in your diet can lead to thyroid abnormalities.
  • 1 in 8 American women will be diagnosed with breast cancer. It is most commonly discovered during a monthly self-exam by the woman herself. Breast cancer can also occur in men, although it is rare.
  • Breast cancer risk factors include advancing age; family history (especially among sisters or mother/daughter); over/underweight; a diet laden with hormones, such as those that can be found in mass-produced red meat and dairy products; excessive alcohol use and smoking; oral contraceptive use; no or few pregnancies; early onset of periods; and DES exposure.
  • To reduce your risk, know your family history! Maintain a healthy weight (>22 and <35>
  • 1 in 300 men will develop testicular cancer. However, the rates are rising, especially in the U.S. and in young men under 30, whose relative risk is now 1 in 100. Testicular cancer is most often diagnosed when abnormalities are noticed during a monthly self-exam of the scrotum.
  • Risk factors include undescended testicle; HIV or other sexually transmitted disease infection; young age; and tall height (about 6'2"). To reduce your risk, be sure to perform self-exams, especially if you are tall and young! Practicing celibacy or monogamy will also reduce your risk somewhat, although testicular cancer can occur in men who have always been celibate.
  • Skin cancer is the most common form of cancer in the United States. Each year there are more new cases of skin cancer than the combined incidence of cancers of the breast, prostate, lung and colon. 1 in 5 Americans will be diagnosed with skin cancer in their lifetime. Do a monthly head-to-toe self-check of your skin so that you are familiar with your birthmarks, moles, and variations in skin tone.
  • Watch for changes, especially irregularity of borders of a mole, bleeding or flaking of a mole or freckle, difference in color from one side to the other of a single mole, or tenderness, irritation or redness. If you notice any of these signs, check with your doctor.
  • To reduce your risk, avoid excess sun exposure, especially between 10 a.m. and 2 p.m. Wear sun-blocking clothing (fact: light cotton has an SPF rating of 16-34. However, it loses 50% of it's sun-blocking ability if wet. Choose polyester or other tightly woven fabrics if you plan to get wet). Sun-blocking lotions have also been linked to skin cancer, so use clothing and hats whenever possible. If you plan a trip to the beach, be sure to eat lots of dark green leafy vegetables, berries and red wine! Antioxidants actually prove effective in preventing sunburn when consumed in high amounts within 24 hours before sun exposure!
Now, here is my short list of how to prevent cancer:
  • Touch yourself - at least enough so that you recognize changes when they happen.
  • Only have sex with one person - ever.
  • Eat really good food - but not too much!
  • Drink some wine - but not too much!
  • Never, ever smoke. Not even when you're stressed. Or angry. Or depressed. (because, believe me!, cancer will make you more stressed, angry and depressed than you currently think you are)
  • Go to the doctor once a year, like it or not. Make sure they check your neck, sex organs, and skin. Ask about other screening tests if you think they apply to you.
  • Smile and laugh a lot. Go to church. Have faith. Be optimistic. Have lots of friends. Live slowly and simply. Relax. Go on vacations.
  • Have sex (but only with one person, remember!) and make lots of babies. Lots and lots of them! Then nurse your babies, for a good long time.
  • If you have a lump or a bump, tell someone. Don't succumb to embarrassment, fear or denial.
  • Drink lots of water.
  • Take your vitamins (or eat them in your food - even better!).
  • Eat whole foods, and avoid refined grain and sugar if you can. Eat yogurt and other cultured foods that promote intestinal health. Don't eat hormones, preservatives, or unnatural ingredients (if it has a chemical name, it's probably not good for you).
  • Don't put iodized salt in your shaker at home.
  • Don't use contraceptives. (how else are you going to be barefoot, pregnant, and cancer-free?)
Hope that should have made you laugh a bit, if nothing else!

Home from the hospital...again

Someday we will all be the same time! Not today, though. I was tempted to take Amelia back to the surgeon yesterday, as she seemed more lethargic and I was having a more difficult time getting fluids into her than the day before. But I held out for this morning, knowing I had well-child check-ups already scheduled for her and Rosalie with our regular doctor, a thorough, wise Christian doctor who has known me since I was a child. Within about 30 seconds of walking into the room, seeing Amelia laying totally asleep on the exam table, he was fidgety and wanted her sent to the hospital by ambulance. She didn't wake up, even for a rather rough abdominal exam (designed to try and wake her up). She did open her eyes briefly when he gagged her with a tongue depressor to get a look at her rather gunky and infected looking tonsillectomy site. He walked us over to see the ENT surgery partner (not the pediatric surgeon, who was actually in surgery at the time). This surgeon didn't feel Amy was quite as critical, and asked if I was comfortable driving her over to the hospital for fluids, some I.V. steroids, and possibly some antibiotics. I agreed.

Once at the hospital, Amelia continued to sleep. She woke briefly when they inserted the I.V., and cried but did not squirm. As soon as they had it in (before it was even taped down), she was back to sleep. When nurses get nervous and the doctor walks in a lays the appropriate-sized ambu bag and mask near the little one's pillow, this nurse/mother gets very worried indeed.

The fluids and I.V. steroids seemed to have a little positive effect. Amy remains gray, her face drawn, her body limp. She is totally quiet, almost silent, speaking only when it is demanded of her. Her vital signs - heart rate, respiratory rate, and blood pressure - are within normal limits, and her oxygen saturation is between 92-96% with no additional oxygen. Her "labs" look okay, with the exception of a very high white blood cell count, with a particular pattern that indicates a potential bacterial infection. The team still suspects she has influenza, but no additional testing was done.

Much to my consternation, I could not talk the pediatric team into keeping her overnight in the hospital for rest and fluids! I am now camped out on the couch, with her sleeping on the floor next to me. My discharge instructions are to check on her hourly throughout the night, taking her temperature and forcing fluids. I do wish they would take responsibility instead of foisting it on me! I am happy she is a bit perkier, but feeling that I will probably end up back at the doctor in the morning with a still very sick girl.

Could you pray for a few specific things for me?
  • Rapid healing (overnight improvement would be just awesome!)
  • Ability to drink plenty of fluids & stay hydrated
  • Appropriate treatment tomorrow if it is necessary
  • Bravery for me as I insist on a different course of action than the venerable pediatrician deems appropriate (if necessary)
  • No pneumonia
Also, please continue to lift Heather, Jason, Grace, Ian and Tessa Kanz up in prayer. They learned yesterday that their court date in Ethiopia is October 29. Jason plans to travel to pick up Tessa a mere 2 weeks after Heather's surgery and a week or so before she starts chemotherapy. Heather's surgery went well, but she required a lymph node dissection, and the cancer was found (at least probably) in her lymph nodes. This means more chemotherapy, probably radiation, and a more difficult recovery, at the least. They desperately need your prayers! Visit their cancer update blog here, at Kanz Adoption. Jason continues to write eloquently about the deeper things of life at Beneath the Crust.

God is our refuge and strength, a very present help in trouble. Therefore will not we fear, though the earth be removed, and though the mountains be carried into the midst of the sea; Though the waters thereof roar and be troubled, though the mountains shake with the swelling thereof. Selah (stop and think on that).
~Psalm 46:1-2~

The rose among the thorns

How well I know what I mean to do
When the long dark autumn-evenings come:
And where, my soul, is thy pleasant hue?
With the music of all thy voices, dumb
In life's November too!
...the whole is well worth thinking o'er
When autumn comes: which I mean to do
One day, as I said before.

~ Robert Browning, By the Fire-Side ~

My local cardiologist is so wonderful. He looked over all the records from Mayo, and was befuddled by their decision not to diagnose me with orthostatic intolerance. That is the diagnosis he gave me today, after reviewing the test results from Mayo. He is loathe to treat me, as the treatments can be worse than the illness. I tend to agree! The main factor that seems to exacerbate my symptoms is the hypothyroidism prior to my radioactive iodine scans followed by the rapid increase in medication post-scan and consequent hyperthyroidism. I will be treated with at least one cardiac medication during that process when I have my next scan in early December. I am hopeful that will help alleviate the massive increase in fainting episodes that I experienced last time.

The bad news is that I won't be driving until at least next summer. That's kind of a hard pill to swallow, on two counts: first, I have to ask for help; like most humans I hate asking for help. I hate being an inconvenience to people. I hate feeling pitied. Chalk that one up to foolish pride probably. Second, the country feels suffocating when you can't get out of it. The same black velvet blanket of night sky that can feel so liberating and peaceful, those same quiet afternoon whispers of wind, the same hollow echo of the dog's bark across the valley before us...the very silence that brings me peace when I am weary also smothers me when I am lonely. It is a good picture: that which is meant to bless is often twisted to curse us. Cancer is like that, too, I suppose. We wallow in pain and suffering when perhaps the trial was just bent to water our souls and teach us the deepest truths of life, the universe, the Love that surrounds. That we might have the "power to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge--that you may be filled to the measure of all the fullness of God." (Ephesians 3:18-19)

My friend Heather has surgery tomorrow. Would you join me in praying that she will come through surgery quickly and easily, and that the surgeon would be able to remove all of the cancer?

What are little girls made of?

“Manhood, once an opportunity for achievement, now seems like a problem to be overcome.”
~ Garrison Keillor, The Book of Guys

I've known boys and girls were different ever since my brother started knocking me over to steal my toys when we were toddlers together on a farm in rural Minnesota. It was brought home to me again and again while playing war games, rocket ship, frontier explorers, cowboys & Indians, 2-against-1 football, and never, ever (and I do mean ever) playing house. Then there were also the toads that could be squeezed and made to pee all over my bedroom carpet; the jokes and guffaws issuing through the closed door when I spent too much time primping in the bathroom; the daredevil antics on bikes and skates; the endless competition to be the fastest, strongest, or most daring at anything (even card games and Monopoly). This idea of differences seems as though it is fast disappearing in our current culture. Yet I saw it in action through my camera lens last night, when we babysat Susan Fern for a few hours of cousin play time. Caleb and Susan, 10 days different in age and nearly the exact same size since birth, are kind of like twins born to two different mothers. They are ecstatically happy playing together, evidenced by the squeals of Susan and the equally high-pitched squeals of Caleb when they are together. They make great companions. Yet they approach all of life so differently. This progression of photos, showing Caleb sitting in one place on the floor, entrenched in a Thomas book, shows what I have been observing for months now. Susan, trying desperately to connect; Caleb, oblivious. Susan, more oriented to relationship than things, changing toys constantly and paying little attention to them. Caleb, giving rapt attention to whatever skill he is mastering at the moment or whatever curious object is currently occupying his fancy. I include these photos here because I think they are both hilarious and enlightening!

I enjoyed this balanced chapter, which reflects both the testosterone-driven character qualities of boys as well as more sensitive traits that have been undervalued in the past. This is from Building Strong Families, a book from Crossway available for free online:
Then finally in this passage we read, “Then the LORD God said, ‘It is not good for the man to be alone’” (Gen. 2:18). Adam needed help. He needed a companion. A man is made to connect with others. I call this the Friend Pillar. So along came Eve, to complete God’s image as male and female. She brought relational genius to the human race. Women generally are much more alert to and adept at relationships than are men. Adam would learn how to relate from Eve. Of course the ultimate attack against aloneness occurs in the magnificent relationship of marriage, but men need help and friendship in every context, whether single or married.

So I see these four “pillars” as a man’s core components: the king to provide, the warrior to protect, the mentor to teach, and the friend to connect. These are the qualities we seek to develop in boys who would become mighty men.

Singing a new song this Sunday

Verse 1:
Even though I walk through the valley of the shadow of death (Psalm 23:a)
Your perfect love is casting out fear (1 John 4:18)
And even when I’m caught in the middle of the storms of this life (Mark 4:35-41)
I won’t turn back (John 6:66-69)
I know You are near (Psalm 145:18)

And I will fear no evil (Psalm 23:4b)
For my God is with me (Psalm 23:6)
And if my God is with me (Psalm 46--especially verse 11)
Whom then shall I fear? (Psalm 27:1)
Whom then shall I fear?

Oh no, You never let go (Hebrews 13:5-6; Deuternomy 31:6; Joshua 1:1-9)
Through the calm and through the storm (Isaiah 25:4)
Oh no, You never let go (John 10:27-28)
In every high and every low (Ecclesiastes 7:14)
Oh no, You never let go (Psalm 55:22)
Lord, You never let go of me (Matthew 28:20)

Verse 2:
And I can see a light (John 8:12) that is coming for the heart that holds on (Psalm 27:14)
A glorious light beyond all compare (Matthew 17:1-5; 1 Timothy 6:16)
And there will be an end to these troubles (2 Corinthians 4:16-18)
But until that day comes (1 Thessalonians 5:1-2; 1 Peter 1:13)
We’ll live to know You here on the earth (Philippians 3:10-11)

Yes, I can see a light (2 Corinthians 4:6) that is coming for the heart that holds on (Psalm 97:11; Psalm 57:4-7; 2 Thessalonians 3:5; Hebrews 10:35-38)
And there will be an end to these troubles (2 Corinthians 4:16-18)
But until that day comes (1 Thessalonians 4:13-18)
Still I will praise You, still I will praise You (Psalm 71; Ephesians 5:8)

If the song has one overarching Scripture reference, I'd say its Romans 8:28-39 and especially verses 38-39:

For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Thanks to Ted Weis at Living the Biblios for the correct Bible references for this beautiful song.

Sunny with scattered cloudiness

Then shall the virgin rejoice in the dance, both young men and old together: for I will turn their mourning into joy, and will comfort them, and make them rejoice from their sorrow. Jeremiah 31:13

The unbridled joy of children unleashes my own appetite for joy and beauty. The gleam of sun in golden locks levitated from dancing heads, the shadow and light as they flit through dappled sunlight on a bridge in autumn, the stepping forward and looking backward all at once that is so inherent to life. This week was a week of remembering cancer, viscerally so. Being in the house of cancer again. It is shadow and light changing hands with my view of the world so frequently that they become one, part of the same vista. I can't differentiate the light from the darkness this week. They simply are, and are together.

...a man may be chastened on a bed of pain with constant distress in his bones, so that his very being finds food repulsive and his soul loathes the choicest meal. Job 33:19-20

Thoughts keep going back to reasons. Why, God? Why me? Why her? Why this one, or that? Is my cancer, in my neck, a direct judgment for past sin? I was a liar as a child, a young adult. I'm not talking about white lies, or even smaller lies of the blacker varieties. As an escape and coping tool, I erected elaborate alternate lives, alternate characters for myself, surrounded by imaginary friends. I did so knowing it was wrong. I hurt people, lots of people. Some of whom I still haven't apologized to (believe me, if I tried, it would become my life's work, and I would be living a My Name is Earl existence, where apologies choke out any other meaning or purpose). I stretched my conscience to the max, running against the bounds God placed on my tongue, on my being. I paid no heed to the inevitable backlash that comes when you reach the limit of that stretchy band and are hauled back to the Arms of Grace by the rebound of your own mindful folly. But is that why I have cancer in my throat, adjoining my voicebox? Grace-minded Christians may argue nay. Judgment-minded Christians may argue yay. I know not why God allowed cancer in my neck. But as I turn my mind to these questions again this week, I cannot ignore the physical placement in proximity to the origin of some of my biggest sins.

The Bible is the history of your future. Bob Marley

The history of the ages, told time without number in the sacred text of my Bible, is a story of call and response. For Christians, the call and the response is a beautiful circle of action/reaction that is echoed over and over in small ways and big ways. Your response - my response - either brings you circling back to Christ's feet, or propels you away, against the straining force of the bed of the slingshot. Eventually, straining hard enough, the wayward Christian may produce enough force against that stretchy band of God's grace to be stung severely when it finally releases, or pulled inexorably back to His throne, where repentance will once again be demanded.

In the Gospels the verb "follow", when referring to individuals, expresses the call and response of discipleship. Later...response meant not a repudiation of homes but rather giving Jesus full allegiance. (Walvoord & Zuck's Bible Knowledge Commentary)

The hope that lights the path is this: whatever the consequences on this mortal clod, the story ends happily ever after. The cure for cancer eludes us here because it isn't found here, just as the answer to it's reasons and sources aren't found here in a laboratory or a doctor's office: they reside in heaven, where all might be healed and forever live in glory worshiping God, the Source.

And how pleasant will it be to contemplate and admire the wisdom and power of the great Creator in this so glorious a change, when I shall find a clod of earth, a heap of dust, refined into a celestial purity and brightness! when what was sown in corruption shall be raised in incorruption; what was sown in dishonour, is raised in glory; what was sown in weakness, is raised in power; what was sown a natural body, is raised a spiritual body! when this corruptible shall have put on incorruption, and this mortal, immortality; and death be wholly swallowed up in victory! How aptly then are the fuller manifestations of God, the more glorious display of all his attribute, the larger and more abundant effusions of himself reserved (as the best wine to the last) unto this joyful day!
John Howe, 1836, The Blessedness of the Righteous Opened