When dreams come true

When I was in college to become a nurse, I used to faint all the time, sometimes 20 times a day. I have a heart condition that is worsened by stress, affected by diet, and drastically influenced by the amount of sleep I get. As you can imagine, I wasn't very good at managing any of those factors as a college student. As a result, I suffered fluctuations in blood pressure and heart rates that caused me to faint all the time, and several times I nearly died because of it. From that point on, I lived life holding my dreams loosely, never knowing exactly how much time God intended me to be on this earth.

"There is surely a future hope for you, and your hope will not be cut off." (Proverbs 23:18)

Years passed, and I got better at living a heart-healthy lifestyle. I was also helped by advances in medical science that directed my cardiologists how best to treat my condition using medications, and finally, in 2010, a pacemaker became available that had a special function specifically designed for people with my heart problem. Life with my heart condition gets better with every passing year, and it looks like I might live a long and healthy life, as far as my heart is concerned.

One of the dreams I harbored deep in my heart, in a space surrounded by tears of grief whenever I fainted and the dream seemed to fade in the distant and perhaps unattainable future, was that of someday obtaining my PhD and teaching with my father at the very university I was a nursing student at.

 "But as for you, be strong and do not give up, for your work will be rewarded." (2 Chronicles 15:7)

Last week, my father carried boxes of books up to office 204 in the nursing building on the campus of the University of Wisconsin - Eau Claire, a short 5 minute walk from the building where he has worked since 1984. The very building in which I fainted all those times, but grinned and bore it, and, by the grace of God, graduated on time in 4 years with my bachelor of science in nursing. This was one dream, one of the dearest to my heart, one that sat right next to my longing to bear children and raise them, that God did plan to help me fulfill.

My office looks out on the historic Council Oak Tree that is on the University seal, and Little Niagara creek.

Today, with a heart that felt more like bursting than giving out, I began orientation to become a full-time professor at my alma mater. I have already been welcomed warmly by some of my old teachers and mentors, along with new faculty who have arrived in the 12 years since I graduated and embarked on my career as a nurse.

I return now with something more important than any career aspirations constantly in my heart and on my mind - a husband, a home, and four beautiful souls who are dearest to me of anything I have on this earth. They have already fallen head-over-heels in love with UWEC, in a similar way as I remember falling for it as a child, entranced with everything from my papa's hands that smelled of chalk-dust to the peaceful cool of his office, and the constant trickle of youthful energy in the form of the students who came to ask questions or talk about their ongoing projects. There is something incredibly synergistic about the education process, especially at the college level, where most students have honed in on an interest all their own, and are deeply invested in their own success.

My children love my office (perhaps partially because they are allowed to watch unlimited hours of Netflix movies on my 2nd monitor while I squeeze in some work). Caleb loves to work the lock on my door and unlock and lock my file cabinet, desk drawers, and explore the inner workings of my printer. Katy has set to work reading a text on philosophy (I do mean to get a shelf of more age-appropriate books set up - but perhaps it is better for her to read the college texts??). Rosy is busy creating art to grace my corkboard. Amelia likes to arrange my textbooks largest to smallest and then redo her work in the reverse. And they all love the trips to the vending machine, simulation lab, library, and colleague's offices, where they are always greeted with smiles and pieces of candy (note to self: get a candy jar for my office!). Caleb is already a building favorite, as he doesn't differentiate yet between acquaintances, friends, family, and gives each of my colleagues a hearty hug and kiss upon leaving!

Oh, how richly my Lord has blessed me! I am thrilling with excitement, waiting for the beginning of classes after labor day, when I will finally get to meet my first group of students in the four classes I will be teaching! I will still be homeschooling, as I was able (again with God's grace! and pray for me as the semesters go by, that I might be able to continue this?) to block my schedule so that I am gone from home 2 days a week, 3 days a week for one week per month.

"Find rest, O my soul, in God alone; my hope comes from him." (Psalm 62:5)

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)

A thank-you video from Amy!

Just a little video today of Amy thanking all those who prayed for her while we waited for test results on the lump on her neck (plus some general kid hijinks). When I posted the good news on Facebook, 86 people "liked" my status update. As the "likes" kept rolling in throughout the day, along with the many comments praising God for His mercy, Amy kept asking, knowing each of those people were praying for her. She was so touched. After two years with very few friends in our lives - and none at all her age outside our own family - these friends who seemed to materialize out of nowhere to her 5 year old mind were such a blessing to her in a trying time. Here is her little thank-you. We hope you enjoy!

You can also click over to Youtube to watch the video (sometimes it streams smoother)

Down to the bone

On a hunt for beauty, you find just what you need to face whatever is in front of you for this day: lament if you are mourning, joy if you are celebrating; work if you have the strength for it; rest if you are weary. Beauty is like a gemstone, cut with many facets, and as you turn it in the sunlight, it reflects all of life on it's different surfaces, the good, the bad, the ugly. I play a song one day, and it is the deepest longing of my heart I hear, and it is good to be known and to hear that I am not alone on this path. The next, the burden lifted, I hear the song of my salvation, and I am glad someone dances with me.

Today I watch the farmer making hay bales, his coif of white hair blowing in the hot furnace of the summer wind, chaff whipped up by his tractor and blowing over my feet on the sun-drenched porch. He is dripping sweat and smiling, hard at work. The kids are gone to Grandma's all week, free from the little cloud of cancer we were stuck under, swimming every day and calling me exhausted and happy and brown as berries in the evening. Aaron and I, my mother, my aunts, we work, work, work to bring some organization and simplicity to this house that has been too long without a good spring cleaning. Clutter makes for difficult work and I am ready to be free of it. We haul out bag after bag of trash and donations for the local thrift store, and slowly the bones of the farmhouse emerge like the first time a girl wears a swimsuit in springtime.

The last two nights, I watched feel good movies. I'm reading an uplifting book for the first time in months. I'm reading the book of Esther and Ruth in the Bible, because I need some happy endings. To remind me to bask in this happy ending. To remind me it is okay to smile, long and wide, for this happy ending. To drink lots of iced tea and spend lots of time sitting in my swing in the summer evening sun, to bring the kids to the pool 8 extra times this summer and sign Rosy up for gymnastics and do messy crafts and work so hard my bones ache to organize and deep clean my house. We are free! He has delivered us!

Now you have every spiritual gift you need as you eagerly wait for the return of our Lord Jesus Christ. He will keep you strong right up to the end, and he will keep you free from all blame on the great day when our Lord Jesus Christ returns. God will surely do this for you, for he always does just what he says, and he is the one who invited you into this wonderful friendship with his Son, Jesus Christ our Lord. (I Corinthians 7:7-9)

Let the dancing commence!

This day I dreaded, the semicircle of doctors with solemn faces and folded hands...today they dug deep with probing fingers, frowning. But after each had taken turn and a conference of heads bent together and muttered measurements, the heads lifted like girls in a chorus line with lipstick smiles and jazz hands. The largest lump, rubbery and flatter, the others DISAPPEARED...yes, all 50+ of them, in a week! They murmured consternation, "things like this just don't happen", poor senior Dr. A shaking her head, referring to her notes and her resident, trying to say yes, she did really feel them just a week ago! They say there is no doubt Amy is cancer free. The surgery tomorrow is cancelled. We are headed home! Words cannot express...

Amy plays while we wait for the oncology team in the doctor's office this morning

Linked up with Michelle

From this one place

Wednesday there was only one square normal hour of the day. The day started and ended with doctor's appointments, and we learned that Amelia has over 50 enlarged lymph nodes all over her body, wherever lymph nodes are. The largest one received an ultrasound thanks to a kind coworker of Aaron's who fit Amy in between patients late in the day. The lymph node is larger than they thought - 2.56 by 2.87 centimeters, which is a little larger than a U.S. quarter. A call from her doctor today was reassuring: although they can't rule out lymphoma or leukemia, it isn't a solid tumor like a thyroid tumor or many other types of cancer that spread through the lymph nodes, and her thyroid looks just fine. Since I had thyroid cancer, that was something they wanted to double check. Her blood work looked about the same. He did confirm that she has the same kidney syndrome that I have, and suggested that we get a lab test at Mayo to double check that diagnosis. I've suspected she had it ever since she was a baby, and just include her in my potassium-rich diet and give her electrolytes every day when I drink them, so knowing this for sure won't have any implications for our lifestyle.

Today was a doctor free day. Whenever fear comes knocking, my reaction is to find ways to savor every minute with my family. I bought a $1 bottle of "real man" (a.k.a. Barbasol) shaving cream for Caleb, and Amy wanted in on the action of "shaving". They used some cake decorating tools and had a blast and both emerged from the bath smelling like little old men.

We put some ribbons in Amy's hair because her hair was so beautiful and curly after her bath. I've been finding that - and yes, I know we don't know yet and I shouldn't even be thinking about it!! - I am just soaking up Amy's hair because it has always been one of my favorite things about her. If she loses it, that will be very hard for me as a mom. So I've been paying more attention to it, doing it every day, and stroking it more than usual when we cuddle. She loves the extra head rubs!

The lab techs sent her home with a bunch of supplies to play doctor (or "doctah" as she says it), so she got busy drawing blood on her siblings when she got home. Here she is "pagin' the doctah for owdows" (orders). She has learned WAY too much in the hospital the last week! She probably knows more medical lingo than most adult patients, between her frequent doctor visits and two nurses for parents.

Another joy we've been reveling in - two beautiful little kittens who are about 5 weeks old now. They are just learning to drink cream from a dish and we had a lot of giggles watching them this morning. They would bob their heads in the dish and then pop them back out because they got a nose full of cream! The skinnier of the two, Seashell (the black and tan one), learned quicker than her sister, Pearl. Caleb scares us a bit because he is such a rough and tumble boy, but he likes to lay on the floor by the kittens and watch them for hours. It's very sweet and at least I don't have to worry that he's going to crush them!

This weekend will be too busy to think much about anything related to Amy's health. I am doing something I only do for someone I really, really love - doing photography for a wedding of a dear friend. I'm actually more excited than usual about it because I'm using my brother's extremely cool antique medium format camera (a Yashika) as well as an old "toy" camera, a Baby Brownie, along with 35 mm film and digital. It will be fun to be shooting in all those formats and I'm sure we'll get some really interested photos because of it. Aaron is my second shooter, and working together with him will be fun. The heat index is supposed to be over 100 degrees and I'm in a black dress, though - whew!

Tuesday we bring Amy to Mayo Clinic in Rochester to a hematology/oncology specialist. There we will finally get some real answers about what is going on with her. Yesterday, we started her on an organic elderberry supplement that is supposed to boost immunity. We also prayed over her, laying on hands and annointing with oil - something I've only ever done when I was diagnosed with cancer myself. We also sent out prayer requests to multiple churches. We may just be hopeful, but both Aaron and I felt like the largest lump on Amy's neck MAY be just a titch smaller and less hard this evening than it has been? If it does start to get smaller, that would indicate that it was some type of infection rather than cancer, which would be a huge answer to our prayers.

Please keep praying for miraculous healing of this little girl!

Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord: 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. (James 5:14-15)

I was about to give up and that's no lie

cardinal landed outside my window

threw his head back and sang a song

so beautiful it made me cry

took me back to a childhood tree

full of birds and dreams

from this one place I can't see very far

in this one moment I'm square in the dark

these are the things I will trust in my heart

you can see something else

something else

I don't know what's making me so afraid

tiny cloud over my head

heavy and grey with a hint of dread

I don't like to feel this way

take me back to a window seat

with clouds beneath my feet

from this one place I can't see very far

in this one moment I'm square in the dark

these are the things I will trust in my heart

you can see something else

something else

~from this one place, sara groves~

Please post this blog button all over the internet and rally prayer for my daughter as we face the uncertainty, grief and fear of the coming weeks.

<a href="http://turquoisegates.com"><img src="<a href="http://www.flickr.com/photos/yellowfarmhousephotography/7333866990/" title="Amelia-blog-button by Yellow Farmhouse Photography, on Flickr"><img src="http://farm9.staticflickr.com/8016/7333866990_4945a025f3_o.jpg" width="250" height="304" alt="Amelia-blog-button"></a>" /></a>

Now I'm a Doctor (hood and all)

I was hooded today in recognition of my doctoral degree by Dean Stewart of the College of Nursing and Dr. Teresa Kelechi, my research mentor.

I do not like being the subject of attention - especially the hundreds who attended the convocation ceremony! Stress ran pretty high, and I broke down emotionally once I saw my family afterward - it was a moment of feeling the weight of all the trials we passed through together on the way to this degree. Cancer immediately came to mind, and I was crying with joy that God allowed me to survive to see this moment.

After I got the tears out, I was able to have a little fun with my family, and my dear friend, Dr. Lisa Sternke, part of my original 2007 matriculating class at MUSC. We were trying to look studious - she did a pretty good job, but I just look mischievous. I guess I'll have to work on that expression if I'm going to be taken seriously as a professor! HA! I'd much rather have students who can laugh with me!

Thanks to everyone who took time to lend support in the form of comments, encouragement, and prayers over the 4 years it took to obtain my PhD.

Relief: Emotions on Tuesdays

So many things to be grateful for these days! I picked "succeed" as my word for the year for 2012, and so far, it's living up to it's name. Dissertation approved, graduation just weeks away, cancer in remission...

A couple of mundane things have been the subject of many prayers around here. Amelia continues to battle an infection of unknown origin, and we are keeping a close eye on her as the doctors who've seen her think it could be a mild case of meningitis (again). She seems to be responding well to the newest round of medications, but if you could keep her health in your prayers, we'd appreciate it.

Our family vehicle hit the skids a few weeks ago, and we are searching for a suitable replacement. This means our first car loan in our 10 years of marriage, and it is a difficult step to take. Unfortunately, with all the expenses related to the end of my schooling, we simply don't have the cash to buy anything reliable. We've found a beautiful 2002 Suburban at one of the Eau Claire car dealers. The best thing about this vehicle is that it seats 9 people! This means it will work even after we adopt, and that there is plenty of space for cousins, friends, or grandparents. We're praying that God will clearly direct as we take this scary step.

Finally, I submitted a job application for my dream teaching job at the University my father teaches at. I'm praying hard that I will get a job offer there, as it would be a dream come true to teach alongside my dad. It will also save us about $15,000 in medical costs alone. If you could keep my job situation in your prayers it would be appreciated!

I hope you are having a blessing-filled spring as well! Leave a comment and let me know how I can specifically pray for you. My prayer list is kind of empty these days, and I'd love to add your requests to it.



This is our Emotions on Tuesdays link up. Link up to a post, old or new, about your emotions. Have you written about relief lately? Tuck the graphic at the bottom of your post, and come back to share your story with all of us!

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That magical little word!

I heard the magic words today! I'm in remission! My cancer scan came back completely clean (it always has) but the really awesome news is that my tumor markers have gone from 4.5 in 2010 to 3.5 in 2011 and now 1.1 in 1012!! This is virtually unheard of, as this number is supposed to go up, not down. However, with the advice of my doctor, I started an immune boosting, cancer deadly diet in 2010, and my tumor markers have consistently gone down since then. While I am not "cancer free" because my tumor markers are still positive, I am in remission and have received my green light to start work as a professor and even to adopt (although that is not in our immediate future, as far as we know).

My doctor has never seen someone go all the way back to zero once tumor markers are positive. I will continue to pray and be vigilant about my blood sugar control and healthy food intake, with the hopes that I will be one of the lucky few for whom this miracle occurs.

I will no longer need to take radioactive iodine for the foreseeable future, unless my tumor markers go over 5 at some point. This means no separations from family, none of the nasty side effects, and an end to the rising risk of secondary cancer due to the radiation damage. It means hair on my head, my immune system will be able to finally direct it's healing energy to my other health problems, and an incredible sense of joy as I finally become as SURVIVOR instead of a thriver! I will still have annual cancer check-ups to test my tumor marker level, and will still require the expensive injections to reverse the cancer suppression meds once a year in prep for those labs. Unfortunately, this is the one cloud in the sky: no getting ahead of our health care bills, as we will continue to max out our high deductible insurance every year in January when I get the injections ($25,000 a pop).

Thank you, everyone, for your vigilant prayers and sweet empathy. It has been almost 4 years now...4 years of fighting, feeling miserable, and constantly facing separation from my family. I am out of the woods now, running out into the field of sunshine!

How wonderful, how beautiful, when brothers and sisters get along! It's like costly anointing oil flowing down... It's like the dew on Mount Hermon flowing down the slopes of Zion. Yes, that's where God commands the blessing, ordains eternal life. (Psalm 133: 1-3)

A day of sweet rejoicing

Skye and Smoky cuddling - Smoky's eyes like jasper in the sun.

 It has been a fun weekend with my aunts and uncle. I am going to my parents Sunday night to stay, and then over to my house around 6 a.m.!

The reunion is the silver lining to the separation! I miss my little stinkers and can't wait to squeeze them. I was thinking back to other reunions (this is our 4th time through this) and I know from experience I can't plan to get anything accomplished tomorrow...other than sitting still and letting myself be smothered by the pile of kids that follows me like little steel babies to the mother magnet. Click here if you want to read old posts about previous homecomings.

So today, rejoice with me?

Their very first independent snowman - no help from parents!

Praise God, from whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heav'nly host;
Praise Father, Son, and Holy Ghost!

Praise God the Father who's the source;
Praise God the Son who is the course;
Praise God the Spirit who's the flow;
Praise God, our portion here below!
~ doxology from Ps. 148:1-2, penned by Thomas Ken, 1674 ~ 

Felt prayers {Mayo Day 5}

Suffice it to say she hasn't itched since the prayer comments started pouring in. Well, that's not entirely true: she has stated, a few times, in a very calm voice, "Mama, I am itchy. Can I have some medicine please?" TADA! Prayer at work, people!! Thank you to each and every one who dropped everything to pray for something as small as the comfort of one little kid today. She's more subdued than usual, pale and under the weather as her cough worsens every day. But she has not been screaming in pain! These pictures are from our evening play session a few minutes ago.

Now to him who is able to do far more abundantly than all that we ask or imagine, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. (Ephesians 3:20-21)

A few videos of the last few days - tips on how to keep your kid happy in the hospital! Enjoy!