A little too slow, a little too fast

It's Saturday and the only blank day on the calendar this week. Aaron and Katy traipsed off to the creek for trout fishing in the 90 degree heat, and the other kids are out in the cut hayfield tossing the ball around. I take my first deep breath of the morning and begin to process all we learned at Mayo Clinic yesterday, the good news and the bad, and begin to Google and research the news about Amy's immune system and what it will mean for her future. I trust you want to know, too - a passel of dear readers who've followed every step of her journey from health to encephalitis to seizures and now her latest cancer scare.

Yesterday we traveled back down to Mayo to get the results of her immune system testing from a venerated doctor who is compassionate and personable. This doctor is a little older than myself, and is also just growing her hair back from her own cancer treatment. We laugh together about spiky bedhead and trade secrets about hair products for short, unruly course post-cancer treatment hair before getting into the details about Amy's testing.

She starts with the "good" news, as doctors always do. She has decided that she won't recommend Amy for a bone marrow transplant "at this time" - I breathe a slightly shocked and horrified sigh of relief to this answer to prayer, as I didn't know she would even consider such a thing once cancer was off the table! Apparently she has discovered something about Amy's immune system that would indicate a transplant might be necessary??

She holds out a sheaf of lab results and uses her pen as a pointer, guiding me through the results. Amy's bone marrow, she explains, is not functioning normally. It is not active enough. She thinks this is partly because it has become suppressed by an autoimmune response, which is evidenced by Amy's severe asthma in infancy and toddlerhood, and the autoimmune brain abnormalities (ADEM) she suffered post-brain infection in 2009 and 2010 (click here to read more about that history).

While Amy's bone marrow, one half of her immune system, is not functioning as well as it should, the other half of her immune system is in overdrive! Her lymph nodes and thymus gland are over-reacting to infections and invaders, and actually could be what is suppressing her bone marrow. That is why the doctor doesn't think a bone marrow transplant would work, because Amy's body would just suppress new bone marrow anyway. (Aaron and I wouldn't choose a transplant regardless, so we are thankful we don't have to argue this choice with the doctor!)

In non-medical terms, one half of Amy's immune system isn't working well, but the other half of her immune system is compensating for it by over-reacting. The early, non-specific reaction to infection is not functioning very well, so initially, Amy gets too sick, too quick from routine viruses and bacterial invaders. On the other hand, the specific, highly-tailored response of her body to specific infections that her body has identified is working very well, so she is able to fight off infections in the later stages very well. This is probably why her lymph glands are so swollen right now, after the infection is gone, because her system went into hyper-drive during and after the infection to make sure she fought it off completely. Her overreaction after the initial underreaction may be God's provision to keep her safe from the infections that seem to plague her little body.

The lump on the right side of Amy's neck is visible in this photo.
In the past week, she's developed visible lumps on the left side as well.

While it's never fun to get bad news of any kind, I feel peaceful about the "watch and wait" plan laid out by the immunologist. In general, I am feeling cautious about pursuing treatment for Amy. She seems to be regaining energy and happiness every day, and it seems foolish to me to disturb a little girl when she is visibly healing. I am very pleased that the doctors all seem to be reaching the same conclusion even though they have uncovered some new medical problems along the way.


Oh - one other tidbit from yesterday's appointment: the immunologist confirmed, conclusively and for the second time, that Amelia did, indeed, have diptheria toxoid encephalitis that was vaccine related in October, 2009. 


If you would like to read more about Amy's new diagnoses, click the links below to read some general information about the conditions the doctor found:

• Secondary moderate immunodeficiency
• Bone marrow transplant for secondary immunodeficiency (notice there were 148 patients but only 14 were included in the study: what happened to the other 134? Of the 14 included, 2 died and the condition of 2 more are unreported. Is BMT really that successful for t-cell immunodeficiency? Aaron and I are skeptical.)
• A basic overview and diagram of the immune system, including the relationship of the lymphatic system and bone marrow. The green areas of the diagram are the parts of Amy's body that are functioning on "high", and the bone marrow is what is not functioning well.
• Understanding where the cells of the immune system come from and how they differentiate to become either lymphatic or blood cells. If you are interested in stem cell research, this is a good introduction!

Amelia's frame was not hidden from you when she was made in the secret place: Your eyes saw her unformed body; all the days ordained for her were written in your book before one of them came to be. (from Psalm 139)

Katy's 7th

Katy waited long for a birthday party with friends at the York's horse ranch in Pepin.

A big dream finally come to fruition...an embarrassed smile of joy.

I learned today that my fatigue is probably NOT due to a pacemaker infection, which would require surgery.  Instead, my cancer suppression med (Synthroid) has gotten out of balance again and I am hypothyroid, which is why I am constantly tired.  I still need an echocardiogram (ultrasound of the heart) to insure that there is no "vegetation" growing on my pacemaker wires, which could also cause my symptoms without an elevated blood count.  I will speak to my oncologist on Monday as well, to have my meds adjusted.  The only bad news: it takes weeks to take affect.  Please pray for strength for me for these next few weeks.

Particles of sacrifice reveal untold beauty

Northern lights in the middle of the sky above rural Wisconsin

on August 3, 2010; visible due to an explosion on the sun's surface.

A storm opens our eyes to see, our hands to receive the starry nights that follow.  An explosion - damaging, fire-gushing, volcanic, erupting - on the sun's surface sent billions of particles toward earth.  (A damaging, painful explosion of God's wrath above the Cross snuffed the life out of the Son of God.)  As the particles of that great light-filled body in the heavens float through the galaxies down to Earth's atmosphere, the northern lights become visible all the way down to parts of New England where they are never seen.  (So grace fell like a million drops of the Son's light on my soul, revealing hidden beauty beneath the scars of sin as His light reflected there in my black heart for the very first time, and every time since, when I confess.)

The storms of the spring and summer where suddenly eclipsed today in a dark doctor's office that has held nothing but sorrow for me since March, 2008.  Storms eclipsed, for once, not by more storms - but with a heaping pile of good news!  He took my neck in his hands, and felt no tumor where there has been one since November of 2008.  He looked at my lab work, and discovered that, for the first time since cancer struck back then, my body is fighting back.  I have lost weight, almost miraculously and effortlessly, on my no sugar/no starch/no alcohol/no over-the-counter meds diet.  That is why my thyroid hormones are out of whack - I need less medicine than I did before, because my liver is functioning at 100% and I have gotten a bit smaller.  (Less medicine is, at least in my case, a very good thing!)  My tumor markers are slightly more elevated, but that is probably because my own immune system attacked a tumor in one of my lymph nodes, one in a very inoperable location, and exploded it into a million tiny pieces that now float in my bloodstreams, innocuous because of the new antibodies my body is making.

And so I dance (a quick jig before getting back to work on my exam) and thank God for good news on an otherwise ordinary Wednesday.  For lighting the night sky with green and red, for sending dancing light last night as a harbinger of dancing feet today.  For helping me find better health, for using better health to trounce cancer, at least for the moment.  For keeping me with my family until my next scan, which won't be until October or November now!  God is great!  That is all.

Click on the little images to see bigger ones - the lights are faint,

but they are there!

Sorrow may endure for a night

Summer was looking pretty bleak, a few hours ago. The consummate pleasures of we Northern dwellers crescendo in the summer months...gardening, running around barefoot, swimming, the long shadows of afternoon sun glinting on aluminum softball bats, and the crickets song in evening. How much of that can you revel in, fighting cancer?

Deliverance.

Freedom.

"Sorrow may endure for a night, but joy cometh in the morning."

Aaron gave me a painting yesterday with four words in it: Dream big. [permission granted] And that's what God just did: permitted us to turn again to dreams. The pathology on the 2 inch tumor they removed yesterday came back, miraculously, benign. Which means a summer with hair, a summer without chemo or radiation or vomiting or slowly growing old. A summer without dying from cancer! My survival odds are back to 76% at 10 years. Which, albeit not great odds, is so much better than what we had to contemplate over the past week.

The cloud has passed over the sun, and we are bathed in warmth again. The rain shower has blown past on the summer wind, and we are left in the cool green fields of flowers and frogs singing. We are waiting to hear the katydid's lullaby and look forward to dipping our feet in the rushing ocean later this summer. I can sign the kids up for swimming lessons. I can take my comprehensive exam and continue pursuing my degree. I will be able to take walks, and stand being out in the sun, enjoy my friends coming to visit in June, go to weddings this summer and dance.

I can't wait to get my feet dirty in this field of joy.

On not ignoring my cross

Where's that place where time stood still

Is it under glass inside a frame?

Was it over when you had your fill?

Where's that place where time stands still

I remember like a lover can

But I forget it like a leaver will

It's the first time that you held my hand

It's the smell and the taste and the fear and the thrill

It's everything I understand

And all the things I never will

~Mary Chapin Carpenter, listen here

The only news on my tests today was from my midwife, who says things "look good". I am assuming that means nothing that looks too suspicious for cancer. Feeling very conflicted tonight. Back in 2008, I was told twice it "might" be cancer and twice that it definitely wasn't. And then I had surgery and it definitely was, and a worse kind than predicted. So I don't know how to react to good news, I guess! Praying it is true...not cancer...just weird symptoms and lumps. The nurse today told me I definitely still need to meet with the surgeon on Friday, so I will do that and we will go from there. I guess I am asking that you who read pray for our wisdom as we make decisions, which sound like they may once again be very difficult decisions with conflicting medical information to provide both pros and cons to every possible choice. I am so tired. It is probably emotional exhaustion. I wish I could go to sleep for days and wake up when this is over. I keep gritting my teeth and tugging myself back into the moment, as I read in yet another little gem of a book on suffering, "don't waste your trials". To drop this season like a hot coal, pull my covers over my head in retreat, is to drop the crown that is being wrought which I will someday cast at my Savior's feet. For the message of the cross is foolishness to those who are perishing,
but to us who are being saved it is the power of God. (I Corinthians 1:17)

A line from one of our current worship songs keeps running through my head: there is one thing to be alive for, to take up my cross and follow you, Lord. (from Devotion by Hillsong United)

He sat by fire of seven-fold heat,

As He watched by the precious ore,

And closer He bent with a searching gaze

As He heated it more and more.

He knew He had ore that could stand the test,

And He wanted the finest gold

To mould as a crown for the King to wear,

Set with gems with a price untold.

Can we think that it pleases His loving heart

to cause us a moment's pain?

Ah, no! but He saw through the present cross

the bliss of eternal gain.

So He waited there with a watchful eye,

With a love that is strong and sure.

And His gold did not suffer a bit more heat

than was needed to make it pure.

(Author unknown, read in entirety here)

Answers!

The cultures came back positive for Campylobacter, a very common source of food poisoning. Caleb has now been started on antibiotics. However, Aaron has been on them since Sunday with no improvement, so that is concerning. We also figured out where we got the infection from - we went through a spurt of eating soft-boiled eggs just before Easter, and apparently that is a very common source of this particular bacteria. Katy and I didn't have any, which explains why we did not get sick.

So, a few new prayer requests:

• Effective treatment with antibiotics
• Out of the hospital in time for Grandpa's funeral
• Aaron's quick recovery of strength so he can go back to work
• No development of Guillain-Barré syndrome, which occurs in 40% of patients with severe Campylobacter requiring medical attention

Update from Mayo, Day 1

Waiting it out in the Luther observation unit last Wednesday with Melanie York.

Just a quick 10 p.m. note from one tired Mama to let everyone know that Amy is doing well and she is still an outpatient! There were a few harried moments when she did not handle anesthesia as expected. Because there are some question marks related to her blood work from last Thursday that need further interpretation from a geneticist, the anesthesiologist was forced to use a different type of anesthesia for Amelia's spinal tap today. (We don't have any further details about the blood tests, or I would share) The anesthesia type she has had in the past for sedated procedures, Propofol, has caused no reaction or prolonged waking time. However, the gas form that was used today put her much too deeply to sleep. They ended up putting a breathing tube in and putting her on a ventilator during the procedure and for a short time afterwards in the recovery room.

Amelia much improved this evening after

the spinal tap returned her brain

pressure to the normal level!

She took quite a while to wake up (though nothing like after the tonsillectomy in October!) and also vomited quite a bit in recovery. By the time they had her "stable enough for me to come back", she was fairly alert and screaming bloody murder for "MAMA!" I don't blame her. It frustrates me that, because of HIPAA, I can't be brought back to a semi-private recovery room, which leaves my daughter caught in the gap in misery, fear and loneliness while they try to stabilize her enough to move her to more private surroundings.

Playing with dollar store umbrellas

in the drizzle after dark tonight.

The spinal tap showed that Amelia's pressure in her skull and spinal column remain high, though not as high today as they were during the peak of her October illness. On October 31, her "opening pressure" was 39 millimeters, and today it was 32. That is still well above the quoted normal, which is 5-15. More tests should help determine whether this is due to infection, an auto-immune problem, or a problem with swelling in the veins of her skull that are responsible for draining excess fluid from the brain and spinal cord. We won't know those answers until Friday at the earliest.

Aaron has returned home to work for a few days, and my mom joined us here in Rochester to help out with the 4 kids, who all accompanied us this trip. We are enjoying wonderful hospitality from a dear friend's parents, and now have a glimpse into all the reasons she is as wonderful as she is! A big thank-you to our dear hosts and our friend for inviting us to call her parents, who opened up their beautifully appointed home just minutes from the hospital!

All of us in our "drizzle parade", a.k.a. cooped-in-the-clinic-all-day-craziness.

Cliffs notes: Amelia's infection

He will make plain my duty when the time comes, and until then it is not my concern. We make our lives insupportably complex by disobeying Jesus' command to take no thought for tomorrow. Planning for tomorrow, when planning is necessary and possible, belongs properly to today. Worrying about tomorrow belongs nowhere. The Lord gives us daily, not weekly, bread. He gives strength according to our days, not our years. The work, the suffering, the joy of each day are given according to His careful measure. ~Elisabeth Elliot, A Path Through Suffering

It became apparent to me that an abridged version might help some understand what Amelia is battling currently. As a nurse, I struggled with this all the time: immersed in medical jargon and mumble-jumble on one side of the door, and trying to make it clear without "dumbing it down" for the patient on the other side of the door. Apparently, I've lost some of that skill in my own personal version of medical chaos. I will try again here. Hope it helps! Here goes:

The fluid surrounding Amy's spinal cord has bacteria in it. The bacteria is rare and causes a slow-growing infection. The doctors at the U of M aren't willing to treat the infection because they feel it could be a contaminated sample. Aaron and I disagree: we feel Amy does have this infection. We are going to pursue treatment with IV antibiotics at another hospital.

Prayer requests for this week:

• Doctors in Eau Claire will be willing and able to give Amelia the IV antibiotics she needs
• Amelia will respond to the antibiotics and the infection will be killed
• The antibiotics will also cure Amelia's throat infection, which she has had since last July
• Amelia will be able to eat and gain back weight she has lost. In the past month, she has lost 4.5 pounds, and she is struggling to have the energy and desire to eat
• Amelia will quickly regain skills and brain function she has lost in the past 5 months
• Our marriage and our children will grow and flourish against all human odds under this continued stress
• Relationships at the U of M will be spared even though we are choosing something different than they recommend
• People will see the witness of Jesus in our family through what seems now to be a never-ending trial

Unanswered prayer

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Your hands that shaped the world
Are holding me, they hold me still

~ Your Hands, J.J. Heller ~

The bacterial culture done on Amelia's spinal fluid last week grew a particularly rare anaerobic bacteria, Propionibacterium acnes, on Wednesday, 5 days after the fluid was removed from her body. This bacteria is a common skin bacteria, and usually only causes meningitis or encephalitis in children with hardware in their brains (VP shunts) or post-neurosurgical patients. However, there are a few cases in otherwise healthy children, and most of them are in children who recently had otolaryngological surgery (ear/nose/throat). It is a form of chronic meningitis, with a 2-12 week onset involving severe headaches, nausea, weight loss, double vision and eye tracking abnormalities, and increased sleep, and, very rarely, low-grade fevers. Amy has every one of those symptoms. She is getting worse every day again, as the pressure builds up around her brain.

The problem is that the pathologist who found the bacteria and the infectious disease doctor who was called about it (neither of whom know Amelia or any of the details of her case) are calling this a contaminant. Not a real infection. Her neurologist tend to agree because it would be "so rare" for a child without brain hardware or implants to have this type of infection. After many hours on the phone and internet yesterday, and finally some encouragement from our primary care doctor, Aaron and I took Amelia to the ER at the U of M last night. They admitted her but didn't treat her, and discharged her today with no treatment other than steroids.

To say I am beyond frustrated is probably the understatement of the year. It feels as though we've finally found an answer to what is wrong with this precious girl, and instead of treating her, we are disregarding it. I feel helpless, hopeless, and very, very alone. It seems ridiculous that we should wait for a Monday appointment with her primary care doctor (who probably can't help anyway), her appointment a week from now with the ENT surgeon, who will check the nodules on her vocal cords, which I am sure remain, and another appointment 6 weeks from now with the neurologist. This little girl is not recovering like she should. But what am I supposed to do??

Fear is the hardest emotion to hand over to God. It's rooted in pride, really - what I am really saying is that, if I were only allowed to, I could change the date of my daughter's death, or her eventual recovery or permanent disability, by my knowledge, will, drive. That's simply not the case. I really have no more idea than the neurologists - with the exception of a healthy dose of mother's intuition - whether antibiotics are the necessary treatment in this situation. But I am afraid. I am afraid for Amelia's life, I am afraid for Amelia's personality, behavior, intellect, motor skills. What if we are missing the very key to this entire mess by giving in on this issue? Yet, what more can we, as mere parents?

Amelia was given an orange bear at the ER last night. From Hugs Across America. In the tag, in a child's scrawl, it says "God will heal you". So, at the end of the day, eyes burning from reading research and heart breaking and mind aching, I cling to that. In childlike faith. When everything else falls apart, that remains.

Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. For I, the Lord your God, hold your right hand; it is I who say to you, “Fear not, I am the one who helps you.”