Eighth Week with the New Bone Marrow: December 1 to 7, 1996 (Only December 1 included)

So that you understand what you are reading…  Over the past twenty years I have written more than 180,000 words about the experience from the day of our daughter Rhea’s diagnosis with leukemia (April 18, 1996) until her death (December 26, 1996).  I would write, put it down, pick it up, and then I would write some more.  I finally finished the chronological narrative in early January of this year.  Unless one has lost a child to death, I don’t think the average person would understand the obsessive desire to make sure that she or he is never forgotten. My intention for writing all those words was so that I would remember.  It’s not to publish but only share to help myself remember, to process or maybe to benefit someone else.

This is a first.  I’m going to share some from toward the end, but that’s always been my way…being ass-backwards.  Twenty-six days from now will be the twentieth anniversary of Rhea’s death.  Today, December 1 was a significant day twenty years ago. I am dropping you right into my writing.  This is Chapter 22…It will include my introduction to this chapter (written May 10, 2012), Rhea’s actual writing from her journal and Mike’s postings to an email group that we kept updated during her bone marrow transplant.  Sorry if it’s confusing and not visually organized well, but I wanted to share it.

May 10, 2012

For the past few weeks/months of this latest push to write this memoir, I have done more dictation of Mike’s updates and much less of my own personal writing.   As I dictated the updates, there seemed to be enough detail given in Mike’s postings that I really didn’t feel the need to add to it, or what I would add wouldn’t substantially have given any deeper insight into what was happening with Rhea or with me.  However, as I moved into recording the December updates, I realized that there was so much more happening personally and medically each day with Rhea than Mike could ever know or relate to “The Group.”  Mike and I tried to talk multiple times each day through the BMT, but there were limits as to the time I could spend on the phone and things were happening too quickly, changing back and forth, so that I might tell him one thing at 9:00 and by 11:30 all of it had been reversed.  I am not faulting Mike’s information gathering and sharing on the posts, but just saying that he was limited by the fact that I had to prioritize what I needed to tell him when we did have a moment to talk.

By the time we got to Sunday December 1, 1996, Rhea had endured more medical intervention than anyone should ever have to just to live.  The previous week, as recorded in her journal and I journaled, as well, she was stabbed, suctioned, stabbed again, scanned, scolded and steroid-ed to with-in an inch of her sanity.  To top it off, she was all but imprisoned with me for two months in a small hospital room.  She was a wonderful, uncomplaining, patient.  I started to say “patient patient,” but I was afraid it would be too confusing, but she truly did display an almost unnatural patience with all that was done to her, around her and for her.  Rhea was a strong independent young woman, and the constant drip-torture of her loss of control, dignity, appearance and health had pushed her almost to the point of no return.  I know that both of us wondered what we would be like if we survived the BMT.

It is ironic, after all the time she and I spent together and how much we love/loved each other, that she would write a private post about how hard the experience/steroids/and time together was on our relationship at that moment in the BMT.  Her focus was on people, relationships and not so much on herself.  And the sad irony of it was that her hands were so shaky and her mind disorganized enough, so that she left out the words that would later absolve me from feeling guilty about not being a perfect mother/care-giver.  Now…after all these years…I still need those words, the missing ones.  I could cry.  At the time it happened, God gave me an almost saint-like understanding/empathy for what she was going through. Each day I reached down and God put in my imaginary bag of resources an almost endless supply of patience, medical understanding and ability to communicate with each and every one that came into contact with Rhea.  Please don’t think I’m being boastful.  I truly know it was God’s gift to me.  I was meant to be her care-giver, and I believe that from the beginning of time God knew Rhea’s full life-story (and mine), and He knew I would be called on to do this with her and for her.  I was and am truly blessed.  But there were times…. There were times when too much happened too fast, when someone else was having a bad day and dumped it on us, when the others I love and care for needed a piece of me, too.  I can rationally understand those facts, yet it still hurts that Rhea wasn’t able to finish her journal post that you’ll see below.  Between the steroids and turning a page in her writing, she leaves out some words.  Oh…I would have loved to have seen and received her forgiveness and understanding in her own written words, but that is one more wound I carry that God will need to give me grace to bear.  It was extraordinary times, and she was and is an extraordinary person.  I know she loved me and appreciated the care she received.  There was never any doubt, but I still wish……

From Rhea’s Journal (her handwriting was shakier than the previous post):

December 1, 1996 (Sunday morning)

It’s been a pretty good day today. Except that there is a big heavy storm over mine and mom’s heads. We’ve spend so much time together, two straight months. And they have had their share of me. I have too much to say and not good enough penmanship, so I’ll just keep practicing later.

Dear Father God,

Thank You for today. It was beautiful and tranquil, and peaceful all of the time. Thank you for the reassurance through other people (family and friends) and for your reassurance that everything will work out some way. God’s got his own perfect timing – which I do trust – but it is very scary. Father, I have been really impatient with a lot of people, but not so as (much as? Words left out) with my mom. (She changes pens and the ink goes from black to blue.) I think she is one of … (next page…words left out? Blue ink) care partners I’ve ever had.

I’ve got to go,

Rhea”

 Me-Each Friday Mike would drive to Nashville, and each Sunday he would drive back to Knoxville again.  It was almost pitiful how happy he was to get to Nashville on Friday evenings, and each weekend as we moved deeper and deeper into the BMT, and more and more became complicated with Rhea’s health and her treatment, it was increasingly difficult to include him in the practical care-giving responsibly once he got there.  Each of us had our roles.  Mike’s main role was three hours away as the bread-winner in Knoxville, taking care of insurance, paying the household bills, maintaining the house, watching over Jeff (a junior in high school), being friend/father to live-at-home twenty-one-year-old college junior Heather, and writing daily updates for all who wanted to know how Rhea was doing (and keeping that responsibility of phone calls and emails off of me).  On top of that, he worked in a high pressure executive job as Chief Financial Officer for a thriving food service company.  He also had the torture of knowing his beloved middle daughter was being cured/killed each and every day, and he had no way of knowing immediately what was going on, having to wait for me to have a moment to fill him in.  It was an impossible situation.  So, by the time he got to Nashville on Fridays, he was ready to jump in and help.  How do I say this?  It wasn’t his role.  I was exhausted, and could have really used the help, but once I “spoke the language” of being the on-site care-giver, I didn’t have the energy or time (with things happening so quickly) to fill Mike in or train him so he could be “me.”  I needed help, that was for sure, but the help I needed was one more of presence and emotional/practical assistance so I could continue to be Rhea’s care-giver.  Someone once told me during the BMT that the patient’s care-giver needed a care-giver for them, as well.  Oh, that would have been wonderful!  And poor Mike, I could never have done his responsibilities in Knoxville and kept things running as smoothly as he did.  It was his calling, his gift.  He was indeed a miracle worker at home.

But, as I was saying, with each passing week the stress built so that by the time we stirred the whole family and sometime visitors into the pot of Rhea’s BMT time in Nashville it had occasions of extreme tension and strained Mike and my communication skills. Rhea dumped on me, and Mike and I dumped on each other.  We were exhausted, and there was no easy solution to how we could take a personal break. I am not sure that anyone who has never done care-giving or been responsible for a terminally ill person would understand what I’m trying to say.  Using logic won’t really explain it…or fix it.  It is tiring, emotional work.  Weeks in a hospital hours away from home messes with your mind.  Many times I asked myself how people who don’t have a faith in a higher power could ever do it.  I’m sure they do, but I could never have done it without a close, personal faith in Jesus Christ.  I think that’s part of why I was ultimately so mad at Him (NOT God…I was afraid and too respectful of God, but mad at Jesus) after Rhea died.  It was and is okay.  We (I) got over it.  God was big enough to take my anger and to love me anyway, because he knew how bad I was hurting and loved me unconditionally.  Thank God…and thank you, Jesus.

On with the story…. Mike’s post from December 1, 1996…

96-12-1 Day +51 11:04am (Sunday)

Dr. Wolff just came through with a new group of residents. On the surface, they seem pretty nice. Dr. Wolff was really kind this morning.

Rhea’s temperature is a little elevated this morning (100.2 last night, 99.8 this morning). Dr. Wolff said that with the gastrointestinal tract so affected by the GVHD, little “bugs” can get in there and cause bacterial infection. They have her on at least two antibiotics but said they would be watching her closely. They are not pushing her to eat right now – they still want her gut to rest a little.

Her weight is still about the same. Blood pressure is still good. Liver function is still good. The rash is a little better on her arms and legs. The rash on her stomach and back is still rough in the sense of sunburn healing. Dr. Wolff did say she will probably have some permanent pigmentation damage from the GVHD. We will see and we will pray.

Overall, Dr. Wolff was very pleased. He said things are looking much better and about all they are doing for her right now is watching. WBC was 3800, platelets 15, and packed cell volume 24 Dr. Wolff explained the ATGAM will “eat” through blood products and can decrease her white counts. He said this drug is sometimes used on patients with aplastic anemia, and they have to get worse to get better. (I think that means there counts have to go down before they go back up.) Rhea will be receiving more platelets today and more red blood.

Though blood and related products are covered by insurance, I would like to encourage any of you they can (and I know many have already), to give red blood or platelets whenever possible. If you give to MEDIC please be sure to tell them it is to be credited to Rhea. If any of you plan to be in Nashville during normal business hours, and want to give either, please let us know and will try to set up a time at the Red Cross office nearby for you to give.

We are still looking at getting out of the hospital maybe late this coming week (Friday or Saturday), depending on how things go. Dr. Wolff said they could give TPN outside the hospital if need be to get her out.

Heather and I are going to leave Nashville at around noon to try and get back to Knoxville early. We feel certain we will fight traffic and weather the whole way back.

I asked Rhea if she wanted to say anything, and she said yes: (see the following)…

“I’m sorry I have been distant in my phone calls and talking to people in general. I know it seems like I’m not here sometimes. But I’m feeling better and the steroids are coming down – I’m a little more clearheaded. Hopefully, soon I can do some responding from my own head, mouth and fingers. Thanks for being so understanding. Thanks also for all the prayers…

Rhea”

Really, all of the above is straight from the horse’s (not really a horse but Rhea’s) mouth.

Trudy, Heather, and I all got a good night’s sleep.

Rhea didn’t go to bed until 2:00am.  She got up again this morning at 5:00 or 6:00 and rode her stationary bike. She is pretty bright-eyed this morning.

Well, enough for now. Please, in your quiet time, thank God for all that he has done and is doing.

Mike

12-1-2016 (Me again) It’s hard to believe that this all happened twenty years ago.  It seems so fresh in my memory, and she (Rhea) still feels so close.  Blessings, Trudy

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Disclaimer to the Rhea Writing

April 18, 2016

Rhea on the first day out of the hospital April 21, 1996

Rhea on the first day out of the hospital April 21, 1996

Today is the twentieth anniversary of Rhea’s diagnosis with leukemia. For more than a year I’ve been thinking about this date. I’ve wondered what would satisfy my need to mark this significant occasion. Hunkering down and trying to pretend it didn’t happen was not an option. That date twenty years ago marked the beginning of an ever changing challenge, and “challenge” isn’t the word I’m looking for. But at this point, I think I’m “word-ed out.”
I need to give you a disclaimer to this writing. I didn’t write it for an unknown audience. I wrote it truly for myself…for Rhea, for Mike, Heather, Jeff and for our family and friends. Again, mostly for myself. I didn’t want one “dit or dot” of Rhea’s life from April 18, 1996 to December 26, 1996 to ever be forgotten. It terrifies me that I/we would forget. So, I’ve used entirely too many words (80,000 at last count). I’ve been writing this in fits and starts for YEARS. You will notice me move back and forth with dates…times I’d write (2001), put it down, and pick it back up sometimes months, years later (2003). In most cases I’ve used real names, but not always, and real places, but not always. All of this story, as I’ve written it, has been from my own perspective. I may have at times gotten some of the chronology incorrect (I hope and pray NOT MUCH.) And I may have made guesses, assumptions of motives, emotions that could be incorrect. I’m sorry, but again, I wrote it for myself so that I would remember, and just know that remembering is incredibly hard. Forgetting, however, is NOT an option.
I’m not sure technologically how it will work, but the blog I’m using (WordPress) will ask you to request a password to access the writing. Since I’m not spending the years it took me to write this to edit it, I will feel better with a little control over who sees it.
Also, I’ll post to Facebook when I submit new entries, but there really won’t be a pattern to when I post. I’m guessing there will be a huge amount of writing today, but not sure when I’ll put out the next segment. I hope to get better at it as I go along (format, postings, how to use the blog), and thank you…FB friends, family and friends and folks…for your patience with my convoluted, confusing style. I’m going to be showing you my underbelly, so please be kind if you see stuff I could have done better. I may be a warrior woman, but I have chinks in my armor.
Blessings, Trudy

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just like romeo and juliet

Just had to share this…Love it!

the bricolab

And now I’ve passed along yesterday’s earworm to you. Oh, you don’t know that song? Well, you’re in for a real treat:

Side notes:

  1. I need to learn this dance because the single good thing I can say about my dance moves is: hey, I may look awkward as hell, but when I’m on the dance floor, honey, I need to tell you, I commit to them.
  2. The hopping part at the end makes me feel inexplicably happy.
  3. I sweat that girl’s shoes at minute 1:30.

Now that we all have the soundtrack in our heads, let me tell you about last night’s cocktail and recipe combo: the Juliet & Romeo, and Chinese chicken salad.

View original post 888 more words

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Bearly Awake for Spring

Well, spring HAS sprung!  You know how I know?  The bears woke up!  I rode down to the bottom of the driveway earlier this morning (the location where someone stole my game camera off a tree last fall) and the dummy/non-working game camera I’d replaced it with was gone.  I thought, “Dang it!  Who’d want a broken camera?”  Then I saw the heavy nylon strap that attached it to the tree was ripped into pieces right below it, and the game camera was flung on the ground about 10 feet away.  Hum….I wondered, “What hunter or person would or could tear the heavy strap into and why NOT take the camera.”  I sat on the bike and pondered it for a minute or two, and then I realized that the bigger question was, “What if a person didn’t do it, and what animal would and why?

Strap torn by bear 3-23-15

I rode the 4-wheeler up to the house, and showed M. the evidence.  Both of us were puzzled.  He pondered it a minute and then went back to “businessman work,” and I started trying to solve the problem.  I pulled together a metal angle iron, some screws, the drill, loaded it all on the bike and prepared to ride down and bolt the camera to the tree.  None of my provisions were heavy duty, but I thought it’d work.  I’d show “whoever” that you can’t mess with my stuff!!  I planned to first ride out and check the other game cameras on the property.  It was a good thing that I did, because I would have wasted my time with the angle iron and screws.

When I got to my first, functioning camera, I noticed lots of scratched up dirt on ground around it.  Hum…  I climbed up the steep bank to get the camera card out of it, and saw that one of the two latches was open, and mud was caked all over the outside of the case.  I’m no genius, but it was obvious the poor camera had been molested.  Standing on the side of the hill, with one arm wrapped around a small tree trunk to stabilize myself, I carefully pulled the memory card from the muddy camera and popped it into the big camera that I had slung around my neck.  I figured I’d do a quick preview of the card with the LCD screen on my camera before going to all the trouble of riding back to the house to look at it on my laptop.  YIKES!  I wasn’t sure what to expect, but it was had to refute (even on a tiny camera screen) that I had lots of photos of close ups of a bear…maybe even more than one bear.

MOULTRIE DIGITAL GAME CAMERA

I find it interesting and understandable that she (and it is a mama bear plus at least one cub) manhandled the working camera.  When it snaps photos in the dark, a red LED light flashes.  It doesn’t make a bright light, but it is very visible, and obviously she didn’t like it!  In the pictures, I could see her eyes and the cub’s glow when they looked at the camera and it flashed.  So she definitely noticed it and was annoyed.  So she climbed the bank, chewed, clawed and twisted the dickens out of the camera. The pictures prove it.  My slow internet won’t allow me to post but a couple of photos, but I have shots of bear ears, bear chest, bear whiskers, lots of bear TEETH photos, and the woods all the way around where she twisted the camera as it took pictures. It was hilarious that the camera was still on the tree and still aimed in the direction I placed it originally.  I’m not sure how that happened.    BUT, the camera that she actually tore off the tree was a dud. It doesn’t work, has no batteries and DOESN’T FLASH.  It has hung there on the same tree unmolested since October (while she was gestating her cub and sleeping).  However, she remembered!  Last year, she took all kinds of selfies on that same camera in that same spot, and the fact that it was still there annoyed her so much that she ripped it off the tree.

MOULTRIE DIGITAL GAME CAMERA

Photo of the inside of the bear’s mouth…notice THE TEETH!

I’ve come to the conclusion that:

  1. This is the same mama bear we had around here last year that someone named Labor Day.
  2. She is awake and probably hungry.
  3. She has a cub (maybe a yearling) and is extremely protective.
  4. She DOES NOT LIKE THE CAMERA(S).
  5. I need to rethink where I place my cameras.
  6. I am going to be very watchful when out on the 4 wheeler.
  7. I am going to be carrying my “bear protection” at all times.

Happy Spring!!

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Celebration of Life

We’re two months past Christmas, and I’m only now sitting down to pull my thoughts together.  All through the month of
December SkyDecember leading up to Christmas I knew the day after was coming.  As is typical of how my grief attacks affect me, I woke up on the 26th a chaotic inconsolable mess.  I was gruff, rough, irritable and hurting, and it seemed my softer, more diplomatic people-side was nowhere to be seen.  We had a house full of family—people I dearly love—and yet I couldn’t pull myself together to be polite or to get away.   It was the day after Christmas.  I was tired.  It was our 44th wedding anniversary, AND it was the 18th anniversary of Rhea’s death.  Mike asked me a couple of times what I’d like to do, and I had no answer.  I was hurting, and a part of me wanted to go hide in a hole and come out in January, but the other part of me wanted to relish the once in a lifetime opportunity to spend time with our family that I love so much.

We ate a quiet, somewhat tense breakfast.  Someone said something about going down to the lake and building a fire.  I must not have looked enthusiastic, so our son asked me a question that somehow became the key to be just what I needed.  I don’t think he intended it as anything but a casual comment, but it gave me an “ah-ha-moment.”  He asked something like, “What would it take to make you happy?”  And suddenly I knew.  If it wasn’t possible to physically have Rhea here, then I wanted to do something to acknowledge the reality that she had lived and, I believe, still exists.  I wanted to celebrate her life and, while I was at it, celebrate a few others who’ve gone before.  Maybe I’m obsessed with history…with remembering…with people who’ve passed or who’ve made their mark on me and my family.  Like for example, I named this house Standing Stones when we built it.  I took a fat, permanent marker and signed as many names as I could think of on the cinderblock supports underneath the house, names of people who were and are significant as influencing my life and that of my family. I wrote their names on the 2x4s in the walls.  I have stones, partial bricks and little pebbles embedded in the rock wall behind our wood stove (bricks from the old home place, rocks from the place where we scattered our friend J’s ashes, two half-bricks from the two small country Baptist churches where my grandparents, great-grandparents, aunts and uncles are buried and some pebbles, stones and sea shells that Rhea gathered from our trips the summer before she died).  All of that is good, but it wasn’t what I’d been thinking of that morning.

When Rhea was preparing for her bone marrow transplant in 1996, we began to cut her hair in increments throughout the spring, summer and fall.  We knew she was going to lose it anyway, so why not be proactive instead of reactive.  Each time her hair was cut, I would scoop it up and put it in a zippered plastic bag or envelope.  I had long golden blond hair; I had medium darker blond hair; and I had short dark stubble from the actual time of her transplant.  I saved it all in a box in her room.  And it naturally happened that after that time I collected hair from others….some who have passed on and some who haven’t

  • From Dad as he was going through chemo for lung cancer in 2004. Mother cut his hair and saved it for me.
  • From my special cat Lou when she died in 2010. Lou and daughter H probably pulled me through after Rhea’s death.  It seemed that I couldn’t imagine either of them surviving without me, so I was forced to keep going.
  • Lots of hair from Mom as she went through years of treatment for lymphoma and finally died in 2012
  • From Mom’s special sweetie, A, who is alive and well, but from whom they both decided that it was important to have his DNA presence combined with Mother’s…someday.
  • From Dad’s first cousin L who lives in Spokane, Washington. L is also alive and doing well and just turned 97 years old last month…  L’s mother was born on this farm in the late1800’s, and he is as emotionally connected to this farm/mountain as anyone I know of living or passed on.
  • From Mike’s mother E I had hair that I took from the brush that was in her purse after she died in 2008.
  • From Koogles, the cat that belonged to my sister and then to my brother J, who died at 36 in the early 1990’s. Koogles died exactly one year and one day after J.  I had her cremated, and sent half of her ashes to be interred with J in New York State. I kept a small metal box with the other half, and my daughters used to love to show their dates the small pieces of cat litter mixed with bone fragments as they “courted” in the living room of our old house.
  • From my special girlfriend JD I have a few of her ashes from when we had a celebration of life in October of 2010.

Friday, December 26, 2014 was pleasantly warmer than the week leading up to Christmas, so the family decided we would take the 4-wheelers and Mule (turned into a playpen for the infant grandson) to the lake.  That was the plan for us all along, but when my ah-ha-moment hit, I knew that that was the specific place to have the ceremony I wanted.  I told everyone to go ahead of me, and I ran around the house looking in drawers, boxes, metal tins, envelopes and plastic-zipper-bags stuffed in coat pockets.  It was amazing how quickly my stash of objects came together.  I had no idea of the logistics needed to make it happen, but I just knew we could do it.  Before jumping on my 4-wheeler, I grabbed two six packs of beer, a bottle of wine, some clear plastic cups, the camera and the little basket of objects.  Oh, as I was getting ice, I saw three bags of Pepperidge Farm Milano Cookies on the bottom door shelf of the freezer.  This doesn’t sound too significant, but if I tell you that the expiration date on the cookies is/was December 1996 and January 1997 you might appreciate how long they have been in my freezer.  Rhea’s favorite cookie was the Pepperidge Farm Milano, and, when she was in the hospital for her bone marrow transplant, Mike’s mother and others sent her cookies.  I put them in the freezer when she died, and I’ve never had the heart to throw them away or to open them up.  Now was the time to do something with them.

Milano Cookies

Once I got to the lake with my basket full of provisions, I found the rest of the family had built a nice bonfire and were enjoying the bright midday December sunshine.  I quickly explained what I was thinking, and everyone joined in to make it happen.  It was decided that we would use one of the short, clear plastic cups I had in my basket to hold our precious cargo of remains/objects.  First I put in part of a crushed cookie, and then we put in Mom’s hair, JD’s few little ashes, Rhea’s hair, Dad’s hair, L’s hair, A’s hair, E’s hair, Lou’s fur and Koogles’ ashes.  We all stood in a circle and peered down in to the small cup and decided it looked an untidy tornado of hair with cookie crumbles and fragments swept up in the swirl.

Remembrance cup

We weren’t sure how to practically make it happen, but my plan was to scatter the remains on the little lake.  It was totally appropriate, since it is on part of the property we own that has been in my family for almost one hundred and fifty years. We debated about what to do with the cup and how to make it float without immediately turning over.  Several ideas were being discussed when I happened to look up and saw pieces of curled bark laying on the wood pile beside our fire pit.  When you split logs for firewood, frequently the bark will separate from the wood.  We chose a medium size piece that was slightly curled.  Someone (maybe me?) asked if we should set the cup on fire so that it would be like a Viking funeral pyre, but we decided that it would be upsetting, like experiencing them die again.  We set the cup on the boat-like-bark and pushed it out onto the lake.

Floating rembrance cup

A gentle breeze pushed the cup cradled in bark ever so gently away from the bank.  We each took a beer or a cup of wine, and I broke pieces off another Milano cookie and passed them out.  We drank a toast to each person we’d just remembered, bravely ate a nibble of 18-year-old cookie (looking around sheepishly at each other to see if one of us would throw up or die from eating old cookies), drank another toast to wash down the cookie, and then we said a prayer.  Several of us snapped pictures while the little boat was close enough to get a photo.  We sat around the fire looking out across the pond as the cup disappeared beneath the water’s surface, and we talked and laughed and remembered.

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Praying for Hands Wide Open

 I’m not sure how this is going to come out.  I am trying a different host site to write my blog.  I’ve become paranoid about safety, (especially after seeing how many hits I’ve had from China on my previous blog site) and this may be no better than the site I used before, but I’m going to try it.  

The below writing is an excerpt from a larger piece (140,000 words) that I’ve put together over the past years about our daughter, Rhea’s, leukemia. I have never shared any of it before, because I am unsure that I might not try to publish it to a larger audience at some point.  I only post this now because I think it might be specifically helpful to two very good friends of mine–one is dealing with advancing cancer and the other is her mother.  I will mention no names, but say that their journey has become especially close to my heart, and I desire with all my being that Rhea’s and my journey might shine a little bit of light on their current path.  And who knows, maybe on someone else’s, as well.

Rhea Chapel Stained Glass Window Vanderbilt Medical Center Nashville TN

By Tuesday morning (October 8, 1996), Rhea had already finished the chemotherapy part of the protocol for the bone marrow transplant, and now she was to begin receiving the first of her radiation treatments.  I wasn’t entirely sure how many she was to receive, but I knew that on Tuesday she would have one in the morning and one in the afternoon.  I was totally unfamiliar with radiation therapy for cancer, and the thoughts of radioactive rays piercing through my daughter scared me to death.  From what I have read about TBI (total body irradiation) for a BMT (bone marrow transplant), the dose of radiation needed to “kill” the immune system of a bmt patient is about 10 to 12 gy (gray..technical measurement meaning “unit of absorbed radiation”).  As a reference, a dose of 4.5 is fatal in 50% of people without aggressive intervention.  Just think what double that dose would do.  It was my understanding that that was why she would receive four, five or six individual doses of less strength (gy) over several days.  This way, she would get the total gy’s needed to wipe out her immune system, and maybe it would be less lethal and have a better result.  Who knows, but it scared me to death.  And to top it off, this was going to be the first time they would not let me go with Rhea for a treatment.

As I’ve written before, prior to us going to Nashville, the only place I could find comfort on certain panicked occasions was sitting in the floor of our church’s Sanctuary praying underneath the cross.  As the orderly tapped on Rhea’s door and asked her to sit in the wheelchair to go downstairs, I must have had a reassuring smile on my face.  I told her, “They said it only takes a few minutes, so you’ll be back up here in less than an hour.”  She looked like she was trying to believe me, but I could tell she was scared.

As the door closed, and I saw the back of the orderly pushing my child down the hall, I turned to Mike and said, “I’ll be back in thirty minutes.”  I had no idea where I was going, but I knew I wasn’t sitting in that room waiting for….I wasn’t sure what.  I knew that Mike would be praying in the room, but I needed something more.  I hurried down the hall and to the elevator.  When I got to the main lobby of the hospital, I walked up to the information desk and asked if VUMC had a chapel.  The pink lady gestured toward the left side of the cavernous lobby, and said, “Through that wooden door.”

I turned and walked in the direction she gestured.  There were couches and chairs scattered all over the brick floor of the lobby, and people were walking back and forth.  I made my way through the people and couches, and at first I couldn’t see anything.   It was dark in that corner, up underneath the shadowy mezzanine balcony.  I saw a small light overtop of a carved, wooden door and walked toward it.  As I got closer, I saw a large brass plaque beside the door.  It said, “THE RHEA CHAPEL.”  I thought my knees would buckle.  Beside the plaque was another smaller one that explained that…so and so with a last name of “Rhea” was a lay person from west Tennessee who endowed the money for the chapel.   I don’t remember if he was a doctor, pastor or lay person grateful to VUMC and gave the funds to make the chapel a reality, but I couldn’t have been any more shocked than if the plaque had appeared miraculously at just that moment on the wall.  It was a Heavenly sign, meant specifically for me.  Walking through the door, I was surprised and pleased to see a cozy dark room with a low ceiling and velvet cushioned wooden pews.  In the front of the room there was a velvet padded kneeling rail facing an altar with lighted candles.  Looking beyond the altar, I stopped and stared.  The entire wall behind the altar had a three paneled stained glass work of art depicting a full-sized Jesus Christ holding a small blond girl in one arm and the other arm outstretched to a group of women and children.  The caption underneath said, “Suffer the little children to come unto me.”

I fell on my knees at the kneeling rail and looked up into his eyes and prayed for Rhea.  I poured it all out, my love, my fear for my daughter, my exhaustion and my limitations.  I prayed for Him to comfort Rhea and hold her close.  I dried my eyes and looked at my watch.  It was time for Rhea to come back to the room from her radiation treatment.  I jumped up to go out of the room and stopped to pick up a brochure/program with the name of the chapel on it.

I rode up on the elevator and walked into the room at almost the same moment as the orderly wheeled in Rhea.  She climbed up in her bed, and Mike and I asked how it went.  She smiled!  She said that they took her into a room down in the basement of the hospital.  It had only one small window, and that was for the technician to peer through to watch the procedure.  She said that they had her sit in a narrow chair, up on top of a table.  They put blocks of styrofoam around her to “make me all one thickness.”  She said they told her that when the red light came on, she would be receiving the radiation, and it would only last a few minutes.  She said, “I was scared when they closed the door and walked out of the room.”  But then, she said she started to pray.  Her face lit up as she told us, “Jesus was in the room.  He sat with his hand on my knee, and I could see his face.  I wasn’t scared at all.”

I was stunned as I listened, overwhelmed with the coincidence, God-incidence, of me finding the Rhea Chapel in the same moments as Rhea sat in Jesus’ presence.  I’m not sure that I’ve ever seen God answer a prayer so quickly, so profoundly and so specifically to any prayer I’ve ever uttered.  I told Rhea and Mike about me finding the chapel, and I showed them the little handout.  We were all speechless.  From then on, when anyone came to visit us, or I became overwhelmed, we went to The Rhea Chapel.  It was a holy place.

At the beginning of Rhea’s procedure for a bone marrow transplant, I prayed to Jesus’ face, looking deep into His stained-glass eyes.  As time went on, and it got harder, I prayed to his open hand, visualizing that everything happening to Rhea, to us, was passing through His hands.  Toward the end, I prayed to his feet, in complete submission and in humble trust.  I would symbolically open my hand as I knelt and visualize putting Rhea in the flat palm with my fingers outstretched.  I wanted to clutch and grasp her, but God gave me grace and the strength to say and mean the words, “Thine not mine.”  It became, and still is, my mantra.

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