“Swaying in the Treetops” Book Signing

This is just a quick update to let everyone know about our upcoming book signing for Swaying in the Treetops this Saturday. We would love to see any of you there (we always have this new author’s fear that it will only be us the whole day 😀).

We will have books for sale, and we will also be happy to sign your already purchased book if you bring it along. (It’s still weird to us that anyone wants us to sign their book, but apparently that’s how this world of writing-a-book works.)

Hope to see you! Please feel free to share. Details are as follows:

Coffee Cup Overflowing Hosts A Book Signing Event
6544 Winford Ave Hamilton OH 45011
Saturday August 13, 2016 11:00 a.m. – 2:00 p.m.

100% of Book Proceeds Go To The Shepherd’s Crook Orphan Ministry

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Table from our January book-signing in Tampa, FL

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The Rhythm of Life

We just thought we would try to give another brief update on the family and Scott’s recovery.

The rhythm of our daily lives continues to be blessedly slow compared to normal, but even with the slower pace, plenty of appointments keep us hopping.

Scott’s recovery has kind of plateaued, so while we are so thankful that it is manageable and he is able to function pretty close to normal and sleeping most nights now, it’s also still a bit discouraging that we seem to be stuck just south of “normal.” We return to Knoxville for a follow-up appointment in August where he will have a check-up and his first bloodwork since treatment. Our hope is that we will see a nice drop in his PSA, and that this number will continue to drop over the coming year. Those things would indicate successful treatment.

Life has begun to slip back into a more normal routine, though, and that is nice. Here are a few highlights from the past few weeks:

  • Dear friends from our early days of marriage came to town, and Scott and I had a wonderful evening out with them. It was so refreshing to do something so normal.
  • Caelyn had seven stones removed from her bladder and recovered well and quickly from that.
  • Roslyn was seen at Children’s to finalize plans for her major bladder reconstruction surgery on September 13.
  • We went shoe shopping for about twenty pairs of shoes. Again, it was so wonderful to be doing something so normal, in spite of the fact that this is always a huge ordeal. Some of the kids had gotten really desperate for new shoes, so we loved checking this one off our list.
  • Nathan’s leg has continued to heal so that he is now able to wear his prosthesis for short periods every day! It no longer fits properly after the changes in the diameter of his calf, resulting from his last surgery, so we are in the process of doing the required dances with insurance as we prepare to have a new leg made for him. But it appears that surgery has definitely been a huge success, and he is so thankful to be up and about much of each day — even doing some Frisbee and soccer with the other kids now.
  • We were finally able to celebrate the graduations for Robyn and Nathan with a special little ceremony here at home.
  • We celebrated our July birthdays (we recently calculated that we average a birthday here every eleven days throughout the year! Wow!)
  • We have done lots of swimming during this very hot summer. I can’t even count how many times we have said, “We are so thankful for Lilyan’s Make-a-Wish pool!!” And the deck that allows us to get the kids in and out of the pool without having to lift them over the side is absolutely amazing and such a life-saver. This is especially true for Kathryn who weighs over a hundred pounds now.

Overall, we are doing well and very thankful for the mostly-calm waters we find ourselves in right now. Today is a special day for us as it marks the first anniversary of our meeting with Nolan. I wrote a blog post about that on my personal blog, and if you’d like to read that, it’s here  — “The Little Black Boy Came.”

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I’ll close with a  few photos of some of the events mentioned above. Thank you so much for your continued prayers.

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Such a special time of rehashing old memories with these dear friends

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Crazy day of shoe-shopping

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So great to see Nathan on two feet and playing in the backyard again!

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The Light at the End of the Tunnel

This is just a very short update to let everyone know that we are definitely seeing improvement for Scott now. His days are much better, and while his nights are still a challenge, they are definitely not as bad as they were before.

So many continue to serve us and help us, and a couple have even offered to keep running some of our errands for us after Scott recovers all the way. These offers have actually been huge answers to prayer. Greg and Kristen will return from China in two days with their new son. At the moment, all signs indicate that they have a fairly long road ahead of them with his adjustment, although they are already seeing miracles. And he will bring their total number of children to eight. They will not be as free to help us as much as they have been in the past, and we have been praying about how to juggle life in the coming weeks as we take back the many aspects of life that others have been carrying for us. But we hadn’t mentioned these needs/concerns to anyone else. Without any action on our part, God moved hearts to provide for these areas of need for our family. And we are thankful.

If you temporary helpers can hang on for just another week or so, we think we will be ready to begin stepping back into a more normal routine at that time. Thank you all more than we will ever be able to say.

And on that note, I just wanted to let you know that I updated my personal blog today with some things from my heart that I’ve been wanting to share. Finding time to write over the past two months has been pretty much impossible, and even today it took me over five hours to finish it while caring for the kids. But these were important things that we wanted to share with all of you; and the thoughts behind this post were prompted by this recent gift. That post is called, “Emptying the Pockets of Our Lives,” and it’s dedicated to all of you who love us so much. (Just click on the title if you’d like to read that.)

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Daily Accepting the Plans of the Master

“Christian consecration is a transfer of one’s plans and ambitions, into the hands of Christ. It is a solemn pledge, too, to accept the plans of the Master for the occupation of the day, no matter how much they may interfere with arrangements we have already made, or how many pleasant things they may cut out of the day’s program. We will answer every call. We will patiently submit to every interruption. We will accept every duty. We will go on with the work which seems best to us, if the Master has nothing else for us to do. But, if He has, we will cheerfully drop our own and take up that which He clearly gives instead.”
~ J. R. Miller, 1911

When I came across the quote above in my morning quiet time earlier this week, I was badly in need of this reminder. Scott had graciously been blessed with several better nights, and we had begun to hope that things were finally turning around for him. Then, the bad nights returned.

This was a blow.

But mostly it was a blow because I had unconsciously begun making my plans. Normal life was in sight; Scott and I would soon be able to begin, once again, sharing the load for the kids’ appointments; the two of us would be able to start getting up early again soon and resume our morning work-outs; taking the family back to church was just on the horizon; maybe we would be scheduling book signings again soon; etc. etc. etc. And when the bad nights returned, I was faced with disappointment about my broken/deferred plans, and sadness over watching Scott continue to struggle.

I have to confess that I had a couple of pretty tough days after that because of my impatience and my unwillingness to “transfer my plans and ambitions into the hands of Christ.” 

God will continue to remind us all through life that our times are in His hands and not our own. And it’s obviously not, yet, time for us to relax back into the crazy rhythm of our “normal” normal. He has a perfect plan for all of this.

I already know that true peace and joy can only be found in trusting God’s all-loving and all-wise plans minute-by-minute. But I lose my grip on this truth sometimes. I’m so thankful for the reminders He sends when I need them, and Scott and I both continue to pray that we won’t waste any of this time God has sent to us as a means of teaching us more and more how to be a Christ-follower. Would you pray that for us while you are also praying for Scott’s healing? 

So, here we are — back to taking things one day at a time, and sometimes one minute at a time, while holding loosely to our plans for each day. Friends have helped so much by delivering food left at the church for us, picking up our very large Kroger Click-list orders, stopping at the pharmacy to grab prescriptions, dropping Meghan off for her OT appointment as her left hand continues to heal from her last surgery. We are very blessed by friends and family who are so willing to come alongside us. Thank you all!

We have managed to move many of the kids’ appointments out to the fall, but some were pressing enough that we’ve had to keep those on our calendar.

  • Caelyn saw her urologist so that we could begin planning her out-patient surgery to have the stones removed from her bladder (most recent x-ray shows seven this time!).
  • Meghan saw her hand surgeon because all of the work done on her right hand a little over a year ago seemed to be coming undone. She is in pain, and as before, losing function and strength in that hand. Her surgeon confirmed that she will have to have another surgery done in the coming months. This time, he will fuse the joint at the base of her thumb. This will, sadly, result in some permanent loss of function for her, but we hope it will also resolve her pain issues. More occupational therapy should help her learn how to live with the lower level of function after that surgery.
  • Nathan saw his leg surgeon again, and while he is way (WAY!) behind what everyone had hoped and expected to see in healing, he is doing very well now, considering the new healing curve. His pain is pretty much completely gone (this is HUGE!), and the wound from his incision is still slowly healing. His surgeon decided to have him consult with Wound Care at Children’s, and after some cleaning and a bit of debridement, they are now treating him with every-other-day applications of medical grade honey. Apparently, honey is a natural debrider, and also draws healing fluids naturally from the body into the wound to speed up healing. Very cool! After a week of these treatments, it’s continuing to look better, but we still have a long way to go, and he is still not able to wear his prosthesis. We are very thankful, though, for so many answers to prayer about his constant pain over the past couple of years. Nathan is, however, really hoping he won’t have to skip swimming for the whole summer.
  • I hope to spend some time this afternoon scheduling these two surgeries, and finishing up some of the rescheduling I still need to do with other appointments.
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Honey therapy. Who knew!?

On Memorial Day, God gifted us with a wonderful day in the midst of our right-now life. On that day, our whole family gathered here to also celebrate a late Mother’s Day and a late celebration of Kathryn’s twelfth birthday. It was so good to have all of us together again.

Some of you may remember that Kathryn suffered a pretty severe seizure last year on her birthday (and this isn’t uncommon during days of intense activity or high excitement), so I was a little stressed when she began to show possible signs of building seizure activity during the afternoon that day (staring into space, not responding to questions, drooling, poor muscle control…). She and I (along with her oldest sister, sister-in-law, and youngest nephew) took a quiet little after-dinner walk, though, and that seemed to stabilize her. Although we believe she experienced some small “absence seizures” that day, she still hasn’t had a big one. In fact, it’s been a full year now since she had a big seizure, and we are so thankful for this! She was able to thoroughly enjoy her party and the time with the family. The photos below give you a glimpse of what a special day it was.

Thanks for all of your prayers and continued notes of encouragement. They mean more than you know. We will continue to keep you posted as this current season in our lives slowly plays out.

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Mother’s Day flowers . . .

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. . . and more flowers

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Such a happy birthday girl who is still crazy about Frozen!

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Determined to blow out her candles by herself

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And she did!

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One of her gifts is a trip to Build-a-Bear with Mommy and Daddy once Scott is well

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My princess — exhausted, but happy at the end of her special day

Cancer Treatment: Engravings of God’s Heart

“It is because we have such shallow views of God’s love that we have such defective views of God’s dealings. We blindly interpret the symbols of His providence, because we so imperfectly read the engravings of His heart.” ~ Octavius Winslow (1808-1878)

We are home. We’ve been home for a week now. And although I know it seems like we’ve been whining an awful lot lately, we will be honest and say that we are really struggling still.

Most of our unpacking is done, thanks to our incredible teens and pre-teens. And the Rosenow House Project team did finish our kitchen! We have moved fully into it and out of our old one. There are absolutely no words to describe what the gift of this kitchen has meant to us. It’s incredible! It’s far beyond anything I ever even dreamed it would be. The difference in our ability to function for meals and anything kitchen-related is astounding. Scott and I have cried so many tears over the beauty of this gift and the love for our family that it represents. And it has been such a bright spot in the middle of an otherwise very dark time.

In trying to explain a bit about what Scott’s going through, we want to stress that this is absolutely not the norm for proton beam therapy. We have communicated with  many who have been through this and they have all completed treatment with very mild side effects or none at all. The men who went through proton at the same time as Scott are back to normal and moving on with their lives while they wait for confirmation that the treatment has killed their cancer. The kind of reaction Scott is having is actually almost unheard of with proton treatment, and Scott’s radiology oncologist told us in a phone conversation today that Scott is the only one of his more-than-600 patients to ever have this happen two-weeks post-treatment. That’s less than one-half of one percent!

There have certainly been times when we have given in to the temptation to ask “why the man with nineteen kids who need him so much?!?!” But in our hearts, we truly do believe that God is writing our story with strokes of love and perfection, even when it doesn’t feel or look that way to us. That’s why the quote at the beginning of this update touched my heart so much when I came across it during my quiet time this morning. It’s impossible to cope with God’s dealings in our lives, especially in a joyful way, if we lose sight of His deep love for us. All of you continue to serve as great and tangible reminders of that love as we march onward.

So where are we now and what does this mean for our family? Scott is in pretty much constant pain; sometimes it gets better during the daytime, but nights are always brutal. This is mostly all related to his bladder and urinary tract. It’s much like having a severe and untreated urinary tract infection over a long period of time. As I said, it gets worse at night, and his bladder sometimes actually just quits working at all, although his body continues to fill it. During the middle of the night just before we left Knoxville, he was in more pain than I’ve ever seen him experience, and I knew it was so severe that I couldn’t get him to the hospital on my own. I was in the process of calling 911 when things finally began to let up for him, and we were able to avoid the trip to the hospital. He had a terrible night, but it was no longer an emergency. This has been his life for about four weeks now, although it’s only been that severe a couple of other times.

We are both functioning on very little sleep, and his oncologist told us today that with such severe inflammation, we shouldn’t expect any improvement at all (None!) for at least another 2-4 weeks. It is his hope that things will begin to slowly turn around at that time. This was really discouraging to hear. The doctor does, however, feel fully confident that this will all return to normal eventually. No one knows how long this will take, so we are just focusing on one day at a time, asking God to keep teaching us and helping us see His fingerprints all around us.

These challenges continue to be even more difficult because Nathan, who is about nine weeks post-op now, and whose leg is still very, very slowly healing, is still confined to a sitting position at least 90% of the day. Additionally, Stephen, one of our biggest helpers, sprained his ankle on Thursday while playing Frisbee in the backyard, so that has us down one more big person.

Roslyn has a huge bladder reconstruction surgery scheduled for September 13, and we won’t be able to tackle that if Scott’s not healthy and whole again by then. So we have taken some steps to simplify our life as much as possible for the next few months while Scott’s body heals.

  • I have spent many hours over the past few days trying to move dozens of appointments previously scheduled for this summer, out to the fall.
  • We have also made the decision to pull all of the kids from their physical therapy sessions. Thankfully, their PT’s both feel that the kids are ready for this step if we continue their home program here and occasional in-office monitoring with them.
  • We are still leaning on the help of generous neighbors and friends to run errands for us. Scott is unable to be out and about at all; the children are requiring all of my focus, and I am in the process preparing for our required end-of-year review for all of the kids’ homeschooling. So we are so grateful to have such an amazing support system surrounding us and carrying us on the harder days.

There really isn’t anything in the daily running of our family that anyone can help with, but if anyone is interested in being available to help with errands, please send us an email, and we will contact you anytime we need help to see if you are available.

God loves us more than we can possibly ever imagine. We know this is true, and Scripture is always there to remind us of this truth. He is doing something beautiful in the midst of this tough time. We will continue to remind each other of this truth when we become discouraged.

“…we have such shallow views of God’s love that we have such defective views of God’s dealings…”

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One last walk on our country road

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Will miss seeing these everywhere

 

 

 

 

 

 

 

 

 

 

 

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We’ll never forget our time in Knoxville or all of the blessings showered on us to make it possible

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Our Queen City was a beautiful sight

 

 

 

 

 

 

 

 

 

 

 

 

 

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Our grandchildren had decorated our walls with artwork to welcome us home

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And our beautiful new kitchen was waiting for us!

 

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Our dogs were very happy to be home

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So many people making salads for lunch, and still room to spare! Scott’s little work station set up on the bar in the foreground

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On one of Scott’s worst days, the mailman delivered a packet of cards made for Scott by our church’s Sunday school Kindergarten class

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Cancer Treatment: The Beginning of the “Lasts”

“Most of us know what home is. There is music in the name which no words can describe. It is not locality or scenery which makes home. Home is the center of love; the spot where the spirit, worn and jaded with life’s bustle, harassed with its anxieties and disappointments, delights to fold its weary wing — that blessed refuge where cherished tones chase sorrow from the heart, and tender hands smooth the wrinkles which care has been ploughing on the cheek.”
~ John MacDuff (1818-1895)

We have started on our list of “lasts” now. Friday was Scott’s last proton treatment, and our last Friday to sleep in Knoxville. Yesterday was our last Saturday in Knoxville. Today is our last Sunday. This afternoon was our last time to swim in the pool here.

We made a decision before we left Cincinnati to not count down days while we were here in TN. Since my brother’s death over thirty-six years ago, we always have tried hard to focus on never wasting one minute of life here on earth — even the seemingly bad ones. We firmly believe that all of our minutes are ordained by the Great Author of our lives; therefore, every moment is precious, has lessons for us to learn, and represents a possible opportunity for us to be used by Him. And we never know how many moments we have left together in this world, so it would be foolish to waste any of them.

So, for the most part, we have managed to be pretty much “in the moment” each day during our time here. This house, named “The Sanctuary” by the owners, really did become a home for us; “a blessed refuge where cherished tones chase[d] sorrow from the heart. We are all realizing that we will feel some sadness when we drive away from here on Friday. We’ll miss our country-road walks; the beautiful drive through the woods when we head into or back from town; the cows and baby goats close to the house; the sunset over the lake.

But we are also missing many things about home, and sometimes not wishing days away is easier said than done. As we’ve neared the end of this journey here in Knoxville and our hearts have begun to turn toward our drive back to Cincinnati, we have found it a little hard not to begin ticking off these markers that lead us home.

When we head down through this wooded country road for the last time on Friday morning, though, it will be with hearts full of cherished memories and much gratitude to God for bringing our whole family to such a beautiful, peaceful, and healing place for this short season in our lives.

We are also so thankful that all of our adult children and their families were able to visit with us during this last week of treatment. Ryan and Anna were even able to be here for Scott’s bell ringing ceremony on Friday. This was an informal yet very touching way to mark his last proton treatment. This short video will share a little bit of the emotion we all felt during this special moment.

This photo tells the story behind the ringing of a bell to celebrate the end of cancer treatment.

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We decided, from the beginning, to stay on here for a few days after Scott finished his treatment for a couple of reasons. We wanted to give the house team plenty of time to finish up things on the kitchen, and we didn’t want to feel too squeezed in trying to pack up to move back home. But Scott’s side-effects from the treatment, while still not like side-effects from other cancer treatments, have been pretty bad. His doctor described them as “way above average” in terms of severity, and told us that out of hundreds of patients, Scott is only the third to struggle so much. So we are very thankful that he will have this week to rest up and to let his body begin recovering from the radiation before we drive back home.

The rest of the week holds a couple more days of really intense school, then some packing before we head home on Friday morning. Recent pictures seem to indicate that our new kitchen is finished and ready for us, and Kathryn (who will turn twelve tomorrow) is so excited that her birthday dinner will be the first cooked in that new kitchen after we get back home and celebrate her birthday a little late.

Here are few pictures of the past few days. As always, thank you so much for the prayers and constant encouragement you all have sent our way.

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We made blackberry cobbler as a mini “almost-finished-with-treatment” celebration two days before Scott’s last proton therapy session

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Our four youngest all ready to go watch Daddy ring the Victory Bell

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Presentation of Scott’s certificate of completion at the bell-ringing ceremony

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Most of the key team members who cared for Scott during his treatment here

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All of our family members who were present, along with some of the staff of Provision. So very thankful for all of these people who took such good care of our whole family.

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After Scott’s ceremony, we all went out for a Mexican dinner to celebrate.

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The name of the restaurant was El Burro Flojo (The Lazy Donkey). Our server made sure the younger ones each got a turn “riding” the lazy donkey before we left.

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Kathryn and I took a few of her sisters along for our walk yesterday

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Carlin’s little sisters, watching her pick wild daisies

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Kathryn with our little wild daisy bouquet

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Last time to swim today — Erin’s little dog Teddy and Nolan watching the older kids play Frisbee in the pool

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While watching these two play on the side of the pool today, I was reminded by their twisted little bodies that there are a number of surgeries and lots of life waiting for us back in Cincinnati. It’s time…

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Scott asked to wait until we are all home together to celebrate Mother’s Day, but these flowers from our walk yesterday were a sweet reminder of how blessed among mothers I am.

 

Cancer Treatment: The End is in Sight

((WARNING: Lots of photos ahead.))

Tomorrow (Monday, May 2), Scott begins his last week of treatment. As is often the case with these kinds of things in life, it seems in some ways like we’ve been here for months, and in other ways we can’t believe it’s almost over.

The past two weeks since our last update have been a mixture of good and bad; fun stuff and tough stuff. But mostly, they’ve been very good weeks. As I mentioned before, our prayers for this time (besides the obvious prayers for Scott’s health during treatment and the healing of his cancer) focused on our need for solitude as a family, the absence of crises, knocking out a lot of school, time to prepare wholesome family meals, and the opportunity to pour large doses of undivided attention onto our children. God has answered these prayers, and we will leave here at the end of our time with a lot of precious memories, and with some new areas of refinement in our characters and in our relationships with each other. There have been pain and some challenges involved in the accomplishing of these things, but in the words of Mr. Spurgeon, “We need winds and tempests to exercise our faith, to tear off the rotten bough of self-dependence, and to root us more firmly in Christ.” 

Scott’s side-effects have continued to worsen, and his radiology oncologist told us this past week that Scott’s symptoms are “way above average” in severity, and that out of hundreds of patients, he is only the third one to have such a tough time. Just to be clear, these symptoms are still not as bad as most cancer treatments, but it has been hard. He hasn’t slept well, and efforts from the doctors to help have resulted mostly in only mild and temporary improvements. So we will pull together and push through this last week of treatments, knowing that we are almost done.

Provision Center for Proton Therapy asked to do a story on our family for their blog. The whole family was honored to have the opportunity to meet Terry Douglass, the founder of this center. He is a man of God who has poured his life into helping hurting people all over the world — including orphans. He has grandchildren who have been adopted, as well as biological grandchildren, and his children and grandchildren are growing up and following in his footsteps. What a legacy. Scott and I have been invited to have a private lunch with him in his office this coming Wednesday so that we can learn more about his areas of ministry. This photo was taken as part of the story they are doing for their blog.

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The waiting room of Provision

After the photo session that day, we were blessed when the staff at Provision arranged for us to take the kids to Ripley’s Aquarium of the Smokies in Gatlinburg. Only a couple of our kids have ever been to an aquarium, and this was a fun day for all of us.

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Some kind of huge fish related to piranhas

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Roslyn, fascinated by the seahorses

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Jaden, up close and personal with this big guy

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Nolan, touching a moon jelly

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Colin, touching a moon jelly

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Owen’s turn

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Jaden touches the moon jelly

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Lilyan takes her turn

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Seeing the sharks from above first . . .

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. . . and then from below

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Colin, checking out a horseshoe crab

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Robyn helps Lilyan

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Roslyn

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Kathryn saying hello to a penguin

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Ethan and Shannen looking at the world from the fish’s perspective

The day after our aquarium excursion, our daughter and son-in-law, Kristie and Greg, arrived with their seven children for a short visit. Their kids and our younger kids are all best friends, and they have all really been missing each other. Although there wasn’t room for them to all stay here overnight, we were able to spend time together during the days. The kids did some schooling together, played games, built countless Lego creations, swam, and made up for the time they have been separated.

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Best buds so happy to be doing school together again

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Shannen and Gabriela; Josiah and Ethan – so happy to see each other

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Five of the seven 6-year-olds between our two families

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Our youngest granddaughter eating her lunch by the pool

We have also been blessed to have met, through mutual friends, an amazing chef here in town who runs his own small restaurant. Andras Bartha is originally from Hungary, and is a reputed culinary genius. In fact, he used to work for Arnold Schwarzenegger at one time, and there’s a signed photo of Arnold in which he refers to Andras as “the Hungarian god.” This man blessed our family with the gift of hot strudel from his oven, and we also had the honor of dining in his bistro on the lake with Greg and Kristen while they were here. The food was amazing, and his bruschetta was the best we’ve ever tasted.

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Andras’s awesome place

 

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We had such a fun evening together

Meanwhile, back at home, miracles continue to happen as those involved in our house project work daily to make it possible for us to come home to a new, fully-functional, bigger kitchen. We are being told that countertops will go in tomorrow (Monday!). Here are few pictures of that’s been going on back there. So thankful for neighbors who are keeping an eye on things and taking pictures for us.

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Our TWO new dishwashers – I am SO excited!

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Love the beadboard on the bar area

Also back at home, All Decked Out returned to donate fencing around the lower side of our pool as a safety precaution for little ones who might try to climb over the side . . .

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We have been so blessed by All Decked Out

. . . and our mommy bird returned to build her nest in the wreath on our front porch, just as she has done for the last two years. What a beautiful reminder of hope this represents as this chapter of our life draws to a close, and as we look forward to returning to Cincinnati and picking up our lives again there.

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As each week gets a little harder for Scott than the week before, we would certainly cherish your prayers as he moves into this final week of treatment. Thank you so much for every single prayer, donation, and expression of love. We continue to feel awed beyond words by all of you.

Cancer Treatment: Dogwood Blossoms and Bowel Obstructions

We are sorry to have left you all hanging after our urgent cry for prayer. Our first few days here were nothing short of grueling, and Internet challenges and a problem with WordPress have made it almost impossible to get this blog post done. I finally connected with a support person at WordPress late tonight, and she helped me work out the bugs. So, finally . . . here you go. Lots of photos.

I am going to back up to the beginning and try to synopsize our first week here as simply as possible.

We managed to leave home pretty close to our planned goal time on Friday, April 8, and the trip here was mostly calm and uneventful except for a little rain.

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Lined up and ready to leave town

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This was my view all day as I followed Scott from Cincinnati to Knoxville. The foliage in TN is breathtaking right now.

We arrived safely at The Sanctuary on Friday evening, April 8. We worked hard and fast to unpack just enough stuff to get everyone into bed for the night.

On Saturday, our teens and pre-teens spent hours unpacking and trying to settle everyone in while Scott and I headed into town to do some major grocery shopping. Somehow, just having a big bowl of fresh fruit here that evening made me feel like we were making progress in getting settled.

Nathan, who is trying not to get impatient, has spent most of his time sitting as he waits for his leg to heal. Thanks to those who have asked about him and prayed for him. The healing is much (MUCH!) slower than we were told to expect, but we are definitely seeing signs that make us hopeful that the surgery seems to have taken care of the original problem. So we are all trying to just keep waiting for the healing to take place — and the swelling to subside and for his incisions to stop oozing blood. It’s happening; just not very fast.

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Kitchen crew

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So much unpacking

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Nathan resting his leg and babysitting Erin’s dog, Teddy

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The “littles” spent the day coloring and confined to this room

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Beginning to feel a bit more like home

On Sunday, we continued working on the unpacking and problem-solving as we tried to get all of us and our gear in place in a functional way. But we did manage to put together a yummy pot-roast Sunday dinner.

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Packed away some of the dishes that were already here and turned this into a school cabinet and storage for the kids’ water bottles and cath timers

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Our first home-cooked meal at The Sanctuary

Monday morning, Scott and I left around 7:00 a.m. for his first treatment, followed by a new-patient/family orientation. On our way down the mountain that morning, I spotted a very isolated bunch of dogwood blossoms right in the middle of the woods along the side of the road. I had forgotten how “every where” dogwoods are in the south at this time of the year. I mentioned to Scott that I’d really like to stop on the way back home later in the day and cut those blossoms for the house.

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We arrived on time for Scott’s first appointment. After his required final pre-treatment CT scan, we were led to the back so he could prepare for his first actual proton beam therapy treatment (PBT). We were told that our assigned treatment area will be the Dogwood Treatment Area and that this will remain the same throughout the course of his treatment. Although I can’t explain it, this struck as as somehow poignant after our dogwood blossom encounter on the way in, and we were even more determined to find that little bunch of blossoms and cut them to take with us when we headed home.

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Our first glimpse of the gantry where Scott’s PBT will be done each day brought back memories of Logan’s Run for me. (Anyone else ever see that movie?).

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As they got Scott onto the table and began adjusting everything to be sure the beam would hit exactly the right spot (there are always many, many checks and double- and triple-checks to assure this), I was suddenly caught a little off guard by an avalanche of emotions. It has mostly just become pretty routine now, but that first treatment was a slap of reality. We think that the frenzied activity required to get us all here kept the two of us from ever fully processing everything before that moment. Or maybe it would’ve happened no matter what. Who knows? But here we are, proton beaming away, and Scott has completed his first week now.

Getting Set Up for First Treatment

My husband who has always taken care of everyone, being taken care of

After an interesting and informative meeting with staff members and other new families (Scott loved the Q&A session with the lead physicist, as he explained more about the science behind PBT), we headed back home in the evening. On the way, we did actually find my special bouquet of dogwood blossoms, and Scott parked the van beside a pasture full of cows and hiked back up the street to cut them for me. And they did look beautiful on our table. We will be on the lookout for more of these before their short season ends.

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Scott, armed with a tiny pocket knife, off to cut my dogwood blossoms

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Mission accomplished

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Beautiful on our table

During the night, Scott struggled with some fairly significant bladder issues. We had been told to expect these to start about half-way through the treatment, and for them to last one to two months after the last treatment. So to begin having problems after only one treatment was concerning and disheartening. I had planned to stay at the house and focus on school with the kids on Tuesday while Scott went for his treatment alone, but in light of this new development, we called his doctor and made arrangements for both of us to meet with him that morning.

After giving out school assignments early that morning to all of the kids who are able to work pretty independently, the two of us headed back into town. His doctor wasn’t too alarmed, although he wasn’t really able to explain why this had happened so soon. He doubled one of the medications he has Scott taking, and that did help things a lot for a few days. (Now, at the end of the first week, those side-effects are worsening again, so we will discuss this with the doctor again at our regular Wednesday talk-to-your-doctor appointment this week.)

Unfortunately, while we were sitting in the waiting room that day, we got a text from the kids telling us that Caelyn was getting very sick and beginning to show signs of another bowel obstruction. (Seriously?!? Could this really happen again?!?) 

I’ll condense this next part of the story and just say that we ended up at East Tennessee Children’s Hospital Emergency Room not once, but twice, over the next two days. After many hours there on Monday, Caelyn’s blockage resolved on its own, just as it did back in October, and we got home very late that night. Tired, but so very thankful that she had not been admitted.

The next day, Wednesday, we noticed some significant swelling in Lilyan’s ankle. Because of lack of sensation, breaks can be serious for children wth paralysis and can lead to severe bone infections. We knew we had to have an X-ray done to make sure she hadn’t broken it in any way. We were thrilled when the X-ray showed no signs of fracture or infection. Its assumed that it’s some type of soft tissue damage, and we were told to take her back to the house and treat her with ice and extra protection for her ankle, which we are still doing. If the swelling persists, we will have to follow up with our orthopedic doctor when we get home after Scott’s treatments are completed.

While we initially panicked a bit at the thought of having to take our kids to an unfamiliar, and much smaller hospital, the staff at East Tennessee was excellent and treated us with so much kindness. The doctor who treated Caelyn even texted us the next day to check on her. We are so thankful for the way we were cared for during those first few tumultuous days here.

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Children’s Hospital in Knoxville

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Caelyn feeling much better after hours in the ER; Meghan tagged along in case we ended up needing her to stay overnight with Caelyn that night. So glad that wasn’t necessary.

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Lilyan’s ER adventure netted her a bundle of gifts and stickers from the X-ray techs who fell in love with her.

On Wednesday  morning (before Lilyan’s trip to the ER), Scott and I both went into town again so we could talk to his doctor during the regular weekly meeting with him. Each time we have been to the center, we have been impressed with the incredible team approach, and the care and concern that is shown to all of the patients and their families.

Finally, finally, finally on Thursday and Friday, we were able to have fairly normal days here at The Sanctuary (except for a broken washing machine and the only bathtub in the house that suddenly stopped draining water — both of which have been taken care of now.) We got a lot of school done and had wonderful home-cooked meals. These are two of  the things I’ve asked God for specifically during our time here.

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Kathryn, fun school while working on fine motor skills

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Tomato, cucumber, and basil salad as part of our Thursday dinner

I know that many of you have worried that we would be bored and have offered to come and visit; some of you even offering to stay in the area for awhile to help us. But what we need most of all is lots of solitude so that we can catch up on the kids’ schooling that has fallen behind over the past few months of preparing for this temporary move, and so that we can shower our children with an abundance of undivided and focused attention. They have been in great need of that for many weeks, and we continue to ask God to make these things possible for us. It was so great to get some tastes of these things during those two days.

On Saturday, we had a quiet and beautiful morning here with the kids, and Kathryn and I took a long walk and picked wildflowers.

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Out for a walk with my Kathryn-girl

Also during that morning, Shannen, who will be ten in July, came and told us she needed to talk a bit. We had already been through countless “counseling sessions” with her and some of the other kids because of some lying, disobedience, and bad attitudes, and the thought of another demanding encounter made us feel like climbing back in bed. These behaviors always tend to get worse during periods of high stress, so they haven’t been a surprise to us, but still exhausting. Incredibly, Shannen’s need to talk to us was something amazing. Our conversation with her ended in her bowing her head and saying, tearfully and in her own words, the following prayer: “God, I really want to be a Christian. Please help me become one of your children so I can be part of your family now. I don’t want to do wrong things anymore even though I know I can’t be perfect like Jesus was perfect, but please forgive me for my sins and help me to do right things now.”

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Sweet Shannen, now a daughter of the King

There was much rejoicing at The Sanctuary that day as one more little Rosenow experienced her second adoption. As Shannen skittered from our bedroom, glowing like an angel, Scott and I hung behind and spent a few emotional moments reminiscing about the long hard battle to get Shannen out of Guatemala. The death of our little Lauren that resulted in Shannen being brought to us still sparks much pain in our hearts, but the beauty of the whole picture was not lost on us in that moment. It’s amazing to stand at a point on the path of life and turn to look way back down that path. God’s workings and fingerprints are often so much more visible from that vantage point.

That brings us to Sunday (today). We still don’t quite have our feet all the way under us, so we didn’t manage to get the family to a church today. But we did a very special family service here at the house, looking out over the lake and the blue sky and the six deer who wandered across the property. Then we had a wonderful Sunday dinner together and ended the day with a little bit of swimming in the pool. Late in the day, a visitor dropped by just to make sure we didn’t forget that we are in the woods and surrounded by lots of critters — even legless ones.

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The back side of the house, as seen when looking up from the lake

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Some pool time

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Our afternoon visitor

That’s pretty much it from our little home away from home. Now that we have the blog working again, we’ll try to update a little more regularly. As always, thank you for the love, support, prayers, and financial gifts that got us here. We are so grateful.

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The Sanctuary

 

 

 

Cancer Treatment: Urgent Prayer Need!

For those of you who are not on Facebook, I want to share my post from this morning. We have arrived in Knoxville with the family, settled in pretty well, and Scott had his first treatment yesterday (Monday.) I have been trying to find time to update everyone, but writing time is a challenge at the moment. But we have an urgent need for prayer, so I’m sharing my Facebook post here:

“Asking for urgent prayer. Scott began having some fairly significant side effects during the night last night — side effects that we have been told to expect, but not until later in his treatment. Because of this, we changed our plans for the day and I came with him to his treatment this morning where we will meet with his doctor to decide if something needs to be changed. (I had planned to just stay at the house and do school with the kids most days.) We are here now, but as we were trying to get Scott to the back for his treatment, we got a text from the kids saying that Caelyn is suddenly very sick. It sounds like another bowel obstruction. We expect that she needs to get to the ER at the Children’s Hospital here asap (unless this clears on its own as it did back in October), but we can’t do anything until we get back to the house. We have written to her colorectal nurses in Cinci and are waiting to hear back from them. We need a miracle. We really need this obstruction to clear out by itself. We need an army of prayer warriors just now. Please share.

We will update as soon as we are able. Thank you for any and all prayers.

Getting Set Up for First Treatment