The Reed Family Blog

Reflecting on the past three months, we’ve had a very full calendar.

·         We had a wonderful vacation at a house on the beach in Galveston June 13-20–Great memories with Auntie, GAMN & GrandDad, kid’s Monopoly, Jr., Who Wants to Be a Millionnaire?, night time and laser light pointers aimed at stars in the sky, sand, sand and more sand, rockers on the deck with the Gulf waves in the distance, searching the shore for crabs by flashlight, putting the canopy up, taking the canopy down, sunscreen, wind, sand, boogie boards, jellyfish stings, miniature golf, putting the canopy up, taking the canopy down, parachute  ’flights’ on the beach, searching for shells, and watching “Swiss Family Robinson.”

·         Swim lessons

·         Free trip to Six Flags to see Hawk Nelson and ride rides. 4 times on the River Rapids brought delight.

·         First time to the circus.

·         Trip to Washington DC to be with Covenant Group friends at a rural cabin in West Virginia. And we gazed at The White House and U.S. Capitol, admired the rockets and Wright Brothers’ airplane at the Air & Space museum, toured the Washington Monument (550 feet at the top), visited the Lincoln Memorial, walked respectfully past the thousands of names on the Vietnam Memorial walls, and climbed on Albert Einstein’s lap.

Matthew at the Wright Brothers' Plane

Matthew's Team--he's on the right

·         The boys started school; Matthew started playing soccer with the Tigers team. 

Scott’s been really tired from the cumulative effects of chemotherapy. This week his oncologist confirmed that he will not do another two week round. That would normally be part of the regimen, but Scott’s blood work is showing that he’s sustained slight liver damage from the chemo treatment. In weighing the risk of possible additional damage from 2 more weeks against the slight 1% gain of cancer fighting benefit—he’s recommending the treatments be done.

He’ll continue seeing the oncologist every few months for blood work. In February his surgeon will do another colonoscopy to see the internal incisions and make sure everything looks good. And he may have periodic CT scans. We’ll  be listening for the words, “At this time there are no signs of cancer….”

While Scott’s still experiencing some side effects from the chemotherapy, he’s glad to be done. This seven-month chapter is over. And the future looks bright. The two of us drove to Wimberly, Texas for a get-away weekend to celebrate at the Creekhaven Inn. We enjoyed the meandering pace and hearing the drizzling rain throughout Saturday. We’re heading back home to see our boys and continue living life–birthdays, holidays, work, school. All of it.

Last summer our family entered the world of summer track. I had no idea this sub-culture existed. Picture junior or senior high track/football fields covered in canopies for day-long meets on six Saturdays. Teams of runners ages 5-17. The three-nights-a-week practices seemed a bit much, until I realized I could go and get some exercise. The 7:30 am -3:30 pm Saturday meet times seemed too long and overwhelming, until I recognized the value of being together all day as a family engaged in a fun activity, talking, working together, cheering for William, deepening bonds. His favorite events are the 50, 100, 200 and 400. He even ran the 800 one weekend. He doesn’t mind the waiting in between events or the drives to the school tracks around the metroplex.

Mama, Daddy, GAMN & Matthew

This summer we’re doing it again. And Matthew—though still too young to actually compete—has been invited by Coach Tanya to do the week-night work-outs and run on the weekends.

Here’s what I’ve come to appreciate during these two summer seasons:

1. You can never have too much Gatorade, orange slices, frozen grapes, or turkey sandwiches.
2. Waiting between heats is much more fun when you can play “War” or “21” with a deck of cards.
3. The hot weather is almost bearable with battery-operated mister fans and a pop-up canopy (an absolute essential). We’re on our third one—the wind took out the first two.
4. Scott does just about all of the work—packing the lunches and drinks and schlepping the gear (chairs, cooler, canopy, umbrella, mister canister).
5. It’s good exercise for the boys.
6. There’s pure joy in getting a ribbon after crossing the finish line. We have a multi-colored stack that continues to grow.

Matthew's First Race--50 Meter Dash

7. We’re adding “Long Jump” to our track event repertoire.

8. We’re in a more culturally and racially diverse environment than most other days of our lives. This is good for so many reasons. We visit and get to know other families.

9. The boys thank Coach B after each practice—and the other coaches who invest their time in helping them learn.

10. Grandparents join us when then can. It’s a great gift any time in life to have cheerleaders in your corner.

“I’m good at the 100 and the 50. I have fun in it. I like the long jump. I jump farther than I did before by pulling my legs up. Pulling my legs up is my secret to jump farther.” ~William

William Racing in Summer 2008

I knew Scott wasn’t just kidding, but I kind of hoped he might be. I thought maybe he’d stop at the earring. But then he mentioned shaving his head…. He said, “It’s something I wanted to do. I wanted to see how I looked without hair. I thought I’d lose my hair from the chemotherapy. However the doctor said that wouldn’t happen with the kind of medicine I would be on. So, when it was clear I would not lose my hair, I thought I wanted to try it anyway.”

Two Fridays ago was the night. He planned to shave his head after the boys went to bed. William expressed concern that he might not recognize Daddy.  I suggested maybe they should be a part of it. So, he got out the razor and shaved away. Matthew wanted to do the same to his hair and grabbed some scissors but we were able to stop him before he could make a cut.

Scott plans to keep this look at least through the summer. He just bought a special razor to maintain it. Since he has a full head of hair, he doesn’t get the smooth look of most bald men. He’s gotten some color now, so the white ‘shine’ is gone.

Not sure what about this has been a bit disconcerting for me. Maybe it’s the change. Maybe it’s the shift from the “boy next door” persona he’s had all of his life to the “bald, goatee, earring tough guy” he now wears. Is it that he looks like he has cancer? I think about the cancer as being in the past—he “had” cancer—since the tumor was removed, hadn’t spread and is no longer in his body.

His CT scan last week didn’t show any changes or problems. The spots on the liver are the same size. They hadn’t shrunk (which they could have if they were cancer and were responding to the chemotherapy)—so that’s a good sign. Everything in the surgery area looks good. He’ll have another colonoscopy in September to check things again.

He starts his next rounds of chemotherapy on June 22—14 days on; 7 days off—through October.

I’m getting used to the new look. It’s only hair. The guy underneath is the same—well, actually, he’s changed a bit, too.

So Scott and I went on a trip to Vegas to celebrate the end of 5.5 weeks of M-F chemotherapy and radiation. He has 4 weeks off before beginning 4 months of pills again (1.5x’s the dose of Xeloda—2 weeks on; 1 week off). After settling in to the comfortable suite at The Venetian, we took in a relaxing lunch by the pool, dinner at B&B (Mario Battali’s restaurant) and a show with Jay Leno.

New Suspension Bridge Over Hoover Dam Spillway

Then Hoover Dam and winning $61.75 in slots and Blackjack before heading to a dazzling show with Cher. The blue sky, excitement and frivolous getaway was a big reminder that life is full and fun.

But the bigger excitement was celebrating William’s baptism on Sunday the 24th. He’s been asking about it for over 6 months and just participated in the baptism classes at church for children. We’ve walked through the “Is Baptism for Me?” workbook and discussions. He’s excited to take this step to let others know he loves Jesus.

I’ve prayed through my questioning that maybe he’s too young and does he really understand and ‘know’ what he’s doing. We’ve been reassured–through his responses to the discussion questions and conversations and the comfort of the Holy Spirit–that he recognizes what this step represents. In my own journey, I have a very clear memory of being in my parents’ bedroom, listening to Billy Graham preach at a crusade when I was 4 and responding to his invitation to invite Christ into my life. I walked from their room into the dining room and asked Jesus into my heart. And have been walking with Him ever since.

William’s ‘moment’ was just as real for him. A year or so ago we were at home, talking about having a relationship with Jesus and our need for forgiveness from our sin. William asked if he could pray and ask Jesus into his heart. Scott and I agreed we would wait for William to express a desire in baptism rather than our suggesting it. As we’ve read stories about Jesus, John the Baptist, the Ethiopian whom Philip baptized, and witnessed baptisms at church, William has asked questions and initiated interest.

We were grateful that Matthew was understanding. Before Sunday he had cried, “I want to be bath-tized!” He also wanted a “chip” from the communion plate as it passed by.

William & Pastor Monte Slaver

Bent Tree had a special time afterward with families—showing short video interviews with the children sharing why they wanted to be baptized. William expressed that he wanted Jesus to touch his life and to tell others he loves Jesus. We had cake. Then came home for brunch with family and friends before heading to the Frisco Rough Rider’s baseball game.

Nachos, Cotton Candy, Pop...where's the game?

We gave him a Bible with his name on it—the “whole” Bible, not just a story Bible with pictures. He has been so excited about it. Wanting to find the stories we’ve read to him. Looking at the Bible dictionary in the back. Taking it with him to read up in the tree. Searching for John 3:16 to read on his own. Asking where the story of Daniel is. And where to find the story of Noah. Several times he’s said how special it is to him.

William and his new Bible

In the span of a week we’ve been in a place pushing extremes and adventure from the outside for creating some rush on the inside…to being with someone who is bubbling with joy and wonder inside that spills out touching others. Easy bet– this has a bigger pay out.

The past few weeks seem to have flown by—with many moments to celebrate:

- A successful Hoops of Hope fundraising event. Our team collected more than $13,000 to help children orphaned by AIDs.

- William’s lost top tooth

- William’s performance as Little Boy Blue in the Kindergarten Mother Goose Festival (4/16)

- My trips to New York with Mandisa (American Idol finalist) for an appearance on The Today Show (4/9) and Columbus Ohio for a Women of Faith event (4/24-25).
- Visits from Byron List (from DC, 4/16) and James Holt (from Kenya, 4/26))

- Matthew mastering bike riding without training wheels (4/22)
-A new bunk bed

Scott enters week 5 of 5-days-a-week chemo and radiation. He’s been in good spirits. Mostly, life is back to a routine. He’s working and drives to his 11:45 radiation appointments during the week. The radiation and pills have some unpleasant side effects and Scott doesn’t get great sleep, as he’s up a few times in the night. But he’s able to ride bikes with the boys and is running again (not as far, fast, frequently or as long as in the past)—but he has energy to run. He shared with his oncologist that he’s had some nausea after he runs. Dr. Wilfong responded that he didn’t have many patients who were running…

People have asked me how I’M doing with all of this and I respond that I’m wired to keep things moving. Often that means I’m like a duck on a pond—still, calm, directional on the surface with the little web feet pedaling like crazy under the surface. It’s how I can keep going but then sometimes crash with a migraine 2 weeks later.

I’m really seeking to be present in the moment, feel, rest, relax, care for myself, receive care from others, breathe in the BREATH of Life, exhale tension, walk with open hands, an open heart and surrender to the God who is in control.

I’m believing the prognosis that the cancer will not return. And so am moving ahead with life. Yet Scott is still walking through a difficult season. I’m not sure I’m walking with him as much as observing him go through what he must.

I’m stunned by the prayers of people and see how much I am NOT (or have not been) a person of real prayer, interceding for others. I’m ashamed. More focused on myself I suppose or my own circumstances. So, God is showing me that I might open myself for this ministry of prayer. That could require time—that I haven’t invested—in quiet. I have pedaling to do.

Our family is helping raise funds for kids in need on Saturday, April 18. It’s set up through Hoops of Hope, an organization founded by 14-year old Austin Gutwein when he realized he could do something to help the children their family sponsored through World Vision. I’ve met him and seen the work that the organization has funded in Africa–building a school and hospital. He’s a remarkable young man.

The group we’re doing this with (The Revolve Tour/Thomas Nelson Live Events) has committed to shoot 1,000 free throws to represent the thousands of children orphaned by AIDs every day. We don’t have to make the shots, we just have to TAKE the shots. There will be counters who will be recording the shots taken by everyone participating–until we hit 1,000. Matthew’s doing it. William’s doing it. I’m doing it. Scott’s doing it.

The boys have enjoyed shooting hoops in our driveway with the backboard they got for  Christmas. Today as we talked about this opportunity to help other kids, Matthew immediately started running through his cheerful ‘presentation’ of what he’d say to potential sponsors. I’m sorry you can’t hear his appeal. Though he sounded a bit like the ring master at the circus, we don’t want to dampen his enthusiasm!

If you’d like to help, you can click here.

If  you’re in the Dallas area and would like to join us on Saturday and take some shots, please email me for details.

This is a lengthy update after a week of silence. Wednesday, March 25, we had the appointment at Texas Oncology. I anticipated a visit in an exam room or office with a desk. That’s what happened. But not until after Scott had stopped for a blood draw just outside a stark white room filled with 20 or 30 patients in Lazy-boys, hooked up to IV’s receiving chemotherapy. I wasn’t prepared for that. Envisioning what would likely be Scott’s future there, I wanted to cry. And I thought that we needed some kind of ‘tour’ or introduction to this part of the journey. Like, “Here’s where you’ll get your blood drawn each time you come to the office. And here’s where you’ll sit for 4 hours while the medicine drips into your veins.”

Instead, after taking Scott’s vitals (he’s lost about 17 pounds), the nurse ushered us to an exam room and we met again with Dr. Wilfong. He invested lots of time with us. After each little conversation about questions, concerns, symptoms, etc. Dr. Wilfong would ask again, “What else is bothering you?” Later we learned that he told his staff to schedule us before lunch or at the end of the day because he knew we’d need more time. He was right—but how in-tune with us and accommodating. He shared he had connected with Dr. Hurley, the surgeon, to discuss treatment options and they intently considered what would be best for Scott—looking at his diabetes, age, family, etc.. And layering that with what treatment option they would want if they were in his shoes. Both men are in their late 30’s/early 40’s with young children. They get it.

Interestingly he said that if this were a colon cancer, we’d be done with treatment right now. But with rectal cancer, when cancer goes thru the wall, there’s a 20% risk of having it come back in that area. Radiation has shown to reduce the risk of local cancer recurrence to 5%. Dr. Hurley did the right kind of surgery technique (TME) when he removed the tumor (which lessens the risk of cancer coming back and doesn’t ‘spread’ cancer cells in the area). So, Scott probably doesn’t need radiation on the area. But the problem is that no one has studied TME alone, without chemo. It’s kind of challenging to recruit volunteers to not get radiation and see what happens just with the surgery—when the studies show that radiation can help. If the cancer were to return, it would be ‘bad.’ It invades the nerves, bladder, prostate etc. It hurts and causes paralysis.

His recommended treatment plan:

-       5 weeks of Xeloda pills (3 in the morning; 3 in the evening), 5 days a week (M-F off on the weekends)

-       5 weeks of intensity modulated radiation therapy (IMRT) on the cancer site (M-F off on the weekends)

-       Likely another 6 months of just the pills (depending upon how Scott tolerates them)

Possible side effects: mouth sores, some nausea, dry skin or blisters on hands and feet, diarrhea, skin sensitive to sun.

He is not recommending the often standard Oxaliplatin IV chemotherapy, which is almost certain to cause some type of neuropathy (nerve damage) in the hands, feet, eyes and affect walking, feeling and sight—pretty severely.

Scott shared that we were confident in his care and personally really like him, but were interested in a second opinion and had reached out to M.D. Anderson. He certainly understood. He asked if we’d like to go ahead and meet with the radiation oncologist. After a quick call, we learned Dr. Barker could squeeze us in. A short drive around the corner landed us at the radiation center and an energetic team. Though Dr. Barker said he had previously worked at M.D. Anderson, I didn’t catch if he’d had a stint in sales—but am sure he must have. Nicknamed the Energizer Bunny, he was really good in working to appropriately ‘sell’ us on the technology and capabilities of the oncology team here in Dallas.

He reassured us that as cancers go, Scott’s situation is really good. Low grade. No lymph nodes. “We can take care of this. Scott’s going to be around a long time.”

My dad researched and found the rectal cancer specialist at M.D. Anderson. He emailed Scott’s situation and recommended treatment plan and asked if the team in Houston would have anything to offer Scott that would not be available to him in Dallas. About 15 minutes later Dr. Eng called Dad and said that the plan seems quite appropriate and no different than they would do at MDA for a patient with Scott’s findings.  At the end of the conversation, she mentioned how easy it was for her to respond to the information in Dad’s e-mail since he had provided her with nearly everything she needed, and that didn’t happen very often.  No surprise to us, though. Dad has been just one question ahead of us in helping provide what we may need to know next. What a gift he is.

So, Scott starts all of this on Monday, April 6. He wanted a bit of a ‘break’ before facing more side effects. The recommendation is to start treatment within 5-8 weeks of surgery, so we’re well in that window. Tomorrow (March 30) Scott will see Dr. Barker to have ‘lines’ drawn on him so the team knows where to aim the multiple laser beams that will guide the radiation beam(s). He won’t be able to get them wet for 5 weeks and will need to cover the area with a plastic trash bag of sorts when showering. Then ‘sponge bathe’ around the marks. He can’t swim or take a bath while the lines are on him.

The radiation should cause no nausea or hair loss (so, Scott’s started growing a beard!). He just should avoid spicy foods.  He can keep working and should be able to drive himself back and forth.

There’s so much more we’re grateful for:

-       An oncologist who’s tops in his field and with whom Scott feels comfortable

-       A quick response from Dr. Eng and confidence that we have tremendous resources locally

-       Pills and no IV treatment for now

-       Return to mostly normal life (Scott started back to work mid-week; his appetite’s returned; he’s driving and exercising lightly; boys are doing fine)

-       Great health coverage (I know I’ve mentioned that before, but it’s huge)

-       Dinners from friends

-       3 free house cleanings thanks to the Buckets and Bows foundation that helps with house cleanings for cancer patients (usually women, but I consulted with an author who knows the owner and he asked if she could help us in this way). It’s called Cleaning for a Reason.

-       Incredible support from our family

If you’re praying:

-       That Scott would have limited negative side effects. He’s especially concerned about the possibility of blisters on his hands and feet.

-       That the medicine and radiation would do their work fully and cancer will not return

-       That we would continue to experience God’s presence in remarkable ways

Since hearing the encouraging news Wednesday night that the cancer was contained, I’ve felt the continual clearing of the fog that’s hovered for five weeks.

Fun with Abuelo

Scott’s dad was with us through Friday. Then later in the day I saw friends and colleagues from across the country–in town for the Christian Book Expo in Dallas. Their hugs, encouragement and reminders that they’ve been praying were so comforting. Scott’s name is on a Post-It note stuck to one friend’s computer. Our family is named on the prayer card of another. They’ve prayed and called the pager (which continues to buzz throughout the day as Scott wears it).

A young woman (Hannah Farver) I’d not met in person, but only corresponded with a year or so ago about a book project, stopped me upon seeing my name badge. She asked if I were the woman who’s been blogging about my husband’s surgery. A bit surprised, I answered, ‘yes.’ She found her way to the Web site through Twitter.com and has been praying for our family. Amazing. 

Through notes from friends and our own reflection, it has not escaped us that we have much for which to be grateful:

-       Living in a major U.S. city with excellent doctors and medical facilities

-       A deep community of family and friends. One friend shared, “You know what struck me the most as I read your blog?  I was absolutely blown away as I thought about how many people you have in your life to support you.”  It’s true.

My birthday was yesterday.  The boys went shopping for birthday gifts for me Friday and shared them—with much enthusiasm. Scott and I enjoyed a nice dinner on the patio at Café Pacific. And tonight my friend Jill hosted a dinner party at her home with our families and a delicious meal.

Scott’s looking forward to going back to work maybe Tuesday next week. We’re contacting M.D. Anderson in Houston about a possible second opinion on a treatment plan. We’ll get the first one on Wednesday with Dr. Wilfong (voted by his peers as one of the best oncology specialists in Dallas).

Just learned that March is National Colorectal Cancer Awareness and Nutrition Month. Here’s to colorful eating and early detection!

Scott’s oncologist called at 9:15 tonight with results from today’s two tests—reporting that the spots in the liver are benign (Focal Nodular Hyperplasia). The cancer has not spread to his liver or abdomen!! This puts the staging of his cancer at stage 2 (T3—into the muscle wall, N0—no lymph node involvement, M0—not metastasized)—really good news in terms of treatment. On the 25th we’ll review a treatment plan with a goal, to quote Dr. Wilfong, of “getting rid of this completely, never to return.” Scott’s all smiles. I am, too. This is definitely one of my 14,000 Things to Be Happy About.

We are grateful that God in His mercy would surround us and hear the prayers of His people pleading for Scott’s liver to be cancer free. And that in His compassion we would have this good news this day.

We’re off to bed to lie down and sleep in peace.

Our family returned today from Lake Ray Roberts after two nights and days camping with friends. The boys were so excited—all 3 of them!  After 4 or more days of non-stop rain, Sunday welcomed dry skies, church (after missing for 3 weeks), and a decision around noon that we would move ahead with the camping adventure. We hadn’t packed or prepared, but threw things together and relied on our friends already there for helping us set up and meals.

Family Camping

In the tent. Out of the tent. Light saber ‘fight’ with Logan. Steak, mashed potatoes, salad, fire, s’mores, laughter, freezing. Pancakes, bacon, orange juice, dirt, puppy dog Pete, bike ride, park, hide n’ seek, lunch, chocolate chip cookies, kite flying, lake, ‘fishing,’ sand, wet, giggles.

Hamburgers, hot dogs, lemonade, s’mores, campfire. Extra blankets and warmer temp = better sleep. Boys not wanting to leave and LOVING the trip. Campfire smell still in our hair after 2 showers. Great memories.

Scott relaxed and had some discomfort the 2 days, but is doing better now. We returned today and Scott’s dad arrived from Costa Rica for a visit. He’ll accompany Scott Wednesday for the liver PET scan and MRI. We’ll ask for ‘results’ before our meeting with the oncologist on the 25th.

Matthew Getting Ready for Bed

William at the Lake

We’re grateful for friends, sunshine, healing, hope, comfort, rest, joy, laughter, blankets, warmth, campfire chats, and being together.