Another News Story

This appeared in the Hillsboro Argus, a local bi-weekly newspaper, yesterday. I was interviewed several weeks ago. While a good story, I am a bit disappointed in the focus. I was supposed to have been interviewed for a story about Hospice and I think the story came out a bit too focused on us. I hope the importance of Hospice really shines through:

A family's long, arduous journey
Published: Tuesday, November 29, 2011, 9:50 AM

MANNING — Scott Adams and his family have traveled a long and difficult path since 2005.

His oldest daughter, Rebekah, was born with cerebral palsy. When she was just three, she was diagnosed with Ewing’s sarcoma, an inoperable cancer in her face and neck. She spent a year in the hospital fighting for her life. And winning. Rebekah is cancer-free.

That, however, is just the beginning of the family’s journey.

In 2007, their home in Manning burned down. They rebuilt.

Then in September 2009, Scott’s wife, Frances, was diagnosed with a genetic form of amyotrophic lateral sclerosis — Lou Gehrig’s disease.

Frances’ father, Charles Mickley, died of ALS in 1999, so Scott and Frances had a good idea of what lay ahead.

“Our motto,” after all that had already affected the family, “was ‘it’s just one more thing,’” Scott said. “After almost losing your child, it’s just one more thing.”

Genetic ALS debilitates the body quickly. After a diagnosis, Scott said, a person might have 7 to 11 months to live.

Within a year of diagnosis, Frances went on life support.

“She would have died in September 2010 without a ventilator,” Scott said. She wanted to see her daughters grow.

ALS affects the nerve cells in the brain and spinal cord, causing a loss of voluntary muscle movement and control. Bedridden, Frances had control of only her eyes. She was able to communicate her wishes through a device that allowed her to “type” with her eyes.

Scott had the help of many family members, including Frances’ younger cousin who came to live with the family and help care for the girls.

Scott had palliative care services to help with long-term care issues through the couple’s insurance company. He was able to continue his work as an adoption attorney from home.

In June of 2011, Frances decided to discontinue life support. With her death imminent, Scott decided to employ the services of Hospice and Palliative Care of Washington County.

Hospice, an independent nonprofit, started in Hillsboro in 1982 as an all-volunteer organization.

Scott said he asked himself, “Is there anything more we can do to prepare the girls?”

“There were no resources for a child who is losing a parent,” he said.

Hospice care provides a wide variety of services, both for the patients and for the patient’s family. Nurses help with pain management and a range of other medical necessities of a dying person.

Hospice counselors came to the house every day or every other day, and worked with Sarah and Rebekah through play therapy on “how to preserve the memories of mommy,” Scott said. Rainbows are now reminders to the girls of their mother.

There are also counselors who work with family members.

“Anyone who was a care provider or was important to Frances,” Scott said, “could talk with Hospice counselors.”

“They gave us control over her life and her death,” Scott said. “They were supportive of her decisions on how she wanted to end her life.”

Frances died in July. After her death, Hospice counselors continued visits with the girls. After a few months, the family transitioned to long-term grief care, with Hospice counselors pre-screening counselors outside of Hospice for the family.

“We’re doing really well,” Scott said. “Better than could ever be expected. There’s loneliness, the feeling of loss. But we were prepared for those times,” he said.

Kathy Fuller is a news reporter for the Hillsboro Argus. She can be reached at kfuller@hillsboroargus.com.

Related topics: ALS, Ewing's sarcoma, palliative care

Click here for a direct link to the article.

The Illusive Art Of Laundry

Ok, maybe this isn't deep, emotional or an earth-shaking announcement (which apparently based on the lack of comments and surprisingly neither was my Thanksgiving Day post) but it is on my mind nonetheless.

Somewhere around my bachelor party some 20+ years ago I was educated that they way to get around laundry duties was to ruin everything every time you got near the laundry machine. Well, I didn't actually think that was the best way to run a marriage, at least not consciously. Apparently my subconscious at least took a partial liking to it as I pretty much did just that the first few years of our marriage. I remember a particularly sexy piece of red lingerie that Frances repeatedly wore as pink and splotchy because of one of my laundry mistakes...but I digress. I really didn't seek to be removed from laundry duty but it pretty much happened that way. I can count on my fingers the number of times I did laundry before Frances got sick.

Then in 2008 we got a new washer and dryer - one of the few benefits of your house burning down. I was actually prohibited by Frances from touching them. It ranked up there close to the 10 Commandments, well okay not really but the prohibition did begin with THOU SHALT NOT...and ended with TOUCH MY LAUNDRY MACHINES! That worked fine, at least from my view point, until France got sick. Once Frances got sick and wasn't physically able to do things like laundry I had a lot more duties. But my laundry duties were for a very limited time and really I wasn't allowed to think about what I was doing, but rather I was just the arms and legs for Frances; I did as I was specifically told. As Frances' illness progressed we got more and more help in the house and (insert LONG list of wonderful women who helped here) did laundry for us up until a month after Frances died and Jenny moved out.

For many months now I have been on my own, and thought I was doing okay. In fact I thought I was doing great. I knew a little about sorting, although apparently "light (weight) and heavy" (which is the way I did it) is not as good of sorting as "light (color) and dark." And I do have to admit that I to this date am perplexed that our new machine doesn't have a "permanent press" cycle like the old one did...but again I digress. I even received great inspiration from some friends up in Washington who both husband and wife told me with good detergent and good washers you just put in everything that can fit and wash it on "normal" and all will be fine. I more than thought I was doing great, I was satisfied!

All of this until a few weeks ago when good friend Pamela was emptying the dryer for me and I got a good schooling on tights, and dresses, and certain socks, and sweaters and...and...etc. etc. etc. that all had to have a special way of doing things. In Pamela's words, "READ THE LABEL!" Admittedly I had never read a label in clothing except to note the size. And then Tia got to the point in my life where she is showing me how to do things and now I have learned that even if the label says it can be done a certain way that I should know that is not necessarily the best way to do it. It was clear to Tia that my lack of understanding of the unspoken (and unwritten) rules of laundry are the reason that my daughter's clothes don't fit, fit funny, are the wrong color and probably the cause of world war although no one has yet blamed me for that.

So why exactly am I writing this? I don't know, maybe because I am doing laundry and needed to vent (pun intended.) Maybe it's because I am confused. But most likely it's because I am frustrated. How exactly does one acquire this "sense" of knowing what to do, when to follow the label, when the label is wrong etc? Why can't this just be simple?

Up next: The Iron - You Can Use It For More Than Waxing Skis!

Thankful For Two...

Or is that 4? Or 6?

As my screensaver alternates between a picture of a beautiful mother and her two beautiful little girls to a picture of another beautiful mother and her two beautiful girls I realize that my heart is doing the same thing. There is a place in my heart for two mothers and four daughters. I would not have thought it so but God has a way of making things happen that we are surprised about.

I previously wrote: "I do not know how I go about finding the right person to do that but God does, and I am trying hard to put my faith in Him. I have written a lot about what I want in that person and may post that here another time, but for now I will say that my next wife will be for another life time and will affect not just my life but the girls’ as well. I want the decision as to who that will be to be a good one and not just an emotional one. But what I do know is that finding that person with all the insurmountable hurdles will be impossible by myself. God, are you listening?"

It's time to share with you that yes indeed, God was listening. Not only was He listening but He was also smiling as He already had a plan. A plan that I can now see He has been preparing for a while. One of these days I may bless you with ALL the ways that He prepared us for this but for the introductory purposes of this post let me be brief and hit some of the highlights.

Shortly after writing the above quote I gave my needs, desires, hopes, loneliness, feelings (or whatever else you want to call them) over to God, telling Him that I was giving up trying to do anything on my own. The next day I received a letter from a very Godly man giving me words that the Holy Spirit had shared with him, words saying that it was not good for man (or me) to be alone and that I would find someone. I think it also important to share that "Go find someone to love." is one of the very last things Frances said to me before she died. A few days after receiving the letter I was in the middle of a very hectic day when God very clearly ordered me to stop and have my wedding ring cut off. It would not come off on its own and I hadn't emotionally been able to cut it off. That day I still didn't want to yet was obedient to do so against my own comfort level. God was preparing me even when I didn't want to be prepared. (Again, there is so much more depth here but these are the highlights!)

The very next day I made a phone call to Tia. I had communicated with her a few times over face book at the request of a very close friend and colleague but had not really hit it off. In fact I was calling her that evening to apologize for my rudeness in not getting back to her and to explain to her that I was not interested in any relationship with anyone at that point. God, however, had other plans as that first phone call between Tia and I lasted 7 hours. And it has just gotten better from there.

Tia was widowed 6 years ago and has two little girls, Sydney and Katelyn that are just as beautiful as Rebekah and Sarah. Each of her girls are just about 18 months older than mine and wonderfully polite, spunky and smart! Tia is a highly respected member and ministry leader in her church and in "researching" her the common descriptive phrase I hear about her is "she is one of the most Godly women I know." After spending some time with her I can echo that. They live about 20 miles from us. Tia is a Mary Kay consultant and home schools.


Only God knows where this is headed; He is being pretty strong about the leading and we are both trying to be cautious. Obviously the mere fact that I am sharing this here means something about the level of seriousness between us. We have committed to building our relationship with behavior that is public and God honoring. We are spending lots of time together doing that and are excited. I guess it can be summed up with this: When asking Sydney whether it was okay that I was taking lots of her momma's time she replied "Momma is happy when she is talking to you." And last night on my face book a friend posted "Yea! Scott's happy!!! A lot to be thankful for indeed!"

Who is Rebekah?

I received this in a private message today. It touched me so much that I asked for permission to share it here:

Hi Scott,

Just a quick note to tell you a story that happened today. The kids and I were on our way to an appointment and Sierrah said out of the blue "You know what I like about Rebekkah?"

"What?" I asked.

"She is always happy, smiling and nice to everyone even though she lost her mom she is still so nice, I don't know if I would be that way." Wyatt [Sierrah's younger brother] agreed.

Just thought you should know your child inspired mine today.

Thank you Darcey. Thank you for sharing Rebekah's inspiration and providing us with a great blessing.

Post Surgery Update

Forgetting that she had 6 teeth removed from inside her gums around her mouth, and the soreness and difficulties associated with that, I'd like to jump to the more important stuff. Because of the area that it was and visual concerns, a biopsy was also taken during her surgery. I received the pathology report this morning:

"Benign squamous mucosa and fibrous tissue with crushed cells consistent with chronic inflammation. No evidence of Ewing's sarcoma." [Emphasis VERY MUCH added!]

Praising God yet again for His divine protection over her and us.

Rebekah Update

Chose to keep Rebekah home today. Grandma M had taken the day off expecting that Rebekah may need some help and she was right. Although it doesn't seem like Rebekah is in a lot of pain (hard to tell though as Rebekah has a pain tolerance higher than anyone I have ever known except mommy) but she is a bit tired. She's playing and then resting, cleaning up and then resting, resting and then resting. Hopefully she'll be back to 'normal' (ha ha ha) soon.

Surgery Over, Home

Just about 9 hours after leaving the house we are home.

Just one pet peeve of the day - why do you tell us to get there 2 hours early and then let us sit in the waiting room for 45 minutes before even admitting us? Backed up? At 7:30? When we were the only ones there (ok - there was initially one other family there?) I just don't get it.

Rebekah was an absolute trooper. She went right into the day surgery room, directed the nurse where she wanted her IV, requested hot blankets, tell the nurse that she wanted to ride downstairs on the cot etc. Once downstairs (in pre-op) she kept asking for the "sleepy boo boo medicine doctor" to come out and put "sleepy milk in her tubes." After a bit of a wait the dentist and the anesthesiologist came into pre-op, put her out and off she went to the operating room.

Skipping forward a few hours. Doc came and got me and told me that things were a bit worse than she had hoped for and instead of taking out 1 or maybe 2 teeth they ended up needing to take out 6 from various places around her mouth. The nice thing is that they didn't fracture the jaw as they expected might happen.

After some time in the recovery room and then some more up in day treatment, we were finally released to go home. It was not without effort however as Rebekah wanted to leave but also didn't want to drink from a cup. If she wouldn't drink from a cup they were going to make sure she got a full bag of IV fluids before she could go. Finally the desire the leave won out over the obstinance of not wanting to drink and she drank enough to make the nurse happy. We were out the door in the wheel chair (making Rebekah very happy) and she slept much of the way home in the van. We are now home and EVERYBODY is tired.

The future with regard to her teeth is not looking very bright and she is basically going to loose everything she has as her baby teeth fall out. She will need full implants, bridges, etc. if she is going to have any teeth. And of course those are going to need to be changed out as she grows. Ugh.

A quick funny about the day. Rebekah started collecting things - medical things. Everyone she saw she would ask for a roll of tape, a glove, an IV band, a kleenex, etc... She ended up the day with a bio-hazard bag full of these things and upon which one of the nurses felt the need to write "DO NOT THROW AWAY" and put one of Rebekah's hospital stickers on it. I'm not sure what her impetus was, but she has lots of memories of the day that she won't remember a whole lot of because of the drugs that were given to her.

Thank you for your prayers and support and thank you for those that joined me at the hospital for our first major event without mommy. It was all very helpful and heart-felt.

Surgery Day

Much has gone on over the last few weeks and there is much to share so please check back. Today is surgery day.

Rebekah and Daddy will be headed to the hospital in just a few minutes for an early morning check in, a general anesthetic and surgery. All working in her her little mouth will be the anesthesiologist, the dentist and the oral surgeon. At this point we believe the plan to be to remove two adult teeth that are dead and infected under the gums. Given Rebekah's physical state of her jaw due to radiation damage, we cannot be sure that the need won't be far greater or that her jaw won't fracture while working on it.

Basically Rebekah's jaw is brittle and her adult teeth are dead in their original spots due to the large amounts of radiation she received to kill her tumor. We knew we were going to have issues in this area and are blessed that we have been able to avoid them until now.

Please pray that today remains simple and Daddy has the ability (and those around him) to calmly get through the day.