Together

I hate to post anything after Brent's video. But sadly, the photos are piling up on my camera. This will be a post of few words and many pictures in an attempt to capture the happenings of the last few weeks.

This is what happens when Keith gets tired of playing and wants to lie down...Cole and Ally join the resting party. I can assure everyone that very little resting actually follows suit.

Keith and Cole "sword-fighting".

Cole and Ally's way of "helping" with the yardwork. Any bystander can see how much yard work we do these days...very, very little.

Keith has enjoyed the sandbox on warm days this month. Trying to keep sand from getting inside his casts has proven difficult but possible.

Grandma B enjoying backyard time with the boys.

Cole: looking squatty in my rainboots.

This is what happens when Ally has a marshmallow craving.



This is what happens when Ally wants to dance.





Grandma Smart joining us on our annual pumpkin patch outing.

If I were as good as Brent and could put a soundtrack to these pictures to describe our life these last few weeks, it would include: Keith and Cole starting preschool, Brent and Darcee celebrating birthdays, Ally potty-training herself and sleeping in a "big girl" bed (the timing of these milestones were not chosen by me. I'm learning that Ally has her own timing and her own way and it's best not to battle her will. I will lose. Every time.), Keith receiving only one blood transfusion this chemo cycle and avoiding any fevers, visits from both sets of Grandparents, lots of visits with Evie and Syd, really fun visit with Aunt Erin, quick but very fun visit with all the Eckhardt sisters and Joe, Keith not sleeping much but somehow happy and energetic, Brent getting in one last dirt bike ride for the season with Clint, soaking in as much beautiful fall time outside as possible, Keith getting fitted for splints and viewing the end of the tunnel of his serial casting, continuing to receive much strength from the prayers and efforts of friends and family.
Phew! Busy but hanging in there.

Thank You

I first heard this song when Keith was in the middle of his radiation therapy and I started to play it almost everyday on the way home from his daily morning treatments. It was so hard to see him coming out of radiation every morning. I wished I could take his pain away, but this song just reminded me that all I could do was be there for him when he needed me. It also reminded me that so many others were there for him and us too. I put this video together, hoping to show just a snapshot of the many, many people who have strengthened Keith during this time. There are many more who aren't shown simply because we didn't have pictures.

Darcee and I have just been overwhelmed at the outpouring of love and support for our family during Keith's diagnosis and cancer treatments over the last 7 months. Our families and dear friends have shouldered this burden right along with us, with someone here staying with us nearly every week to help out with the kids while Darc shuttles Keith to Doctor's appointments and I try to keep my head above water at work. Our parents, brothers and sisters have all spent considerable time and personal expense helping us out during this time. They've cancelled trips, taken off work, rearranged schedules and driven and flown many miles to spend time at our house, getting little sleep, helping out any way they can. Our mothers have been especially helpful. They come to our home and immediately go into "Mom" mode, taking care of anything and everything that needs to be done. Laundry, cleaning, cooking, entertaining, everything. They don't ask, they just do. We love having them and we are so grateful for their constant support.

Aside from immediate family, our dear friends the Eckhardts have been a lifeline during this process. Debbie is like a 3rd grandmother to the kids and she is always available at a moments notice to help out with Cole and Ally. She even rearranges or sometimes cancels her work schedule to accomodate Keith's doctor's appointments. She's set up "Debbie's Clubhouse" in her basement so that Keith has a germ free place to play that is away from home. Keith loves it and Cole and Ally love going there too. Jenny and Katie are also amazing. Jenny turned down a well paying summer job to spend most of her free time at our house, helping Darcee out with the kids. Katie also comes by often to help out. During the summer, almost every day when I got home from work, their green VW bug would be parked outside of our house and they would be inside playing with the kids and taking care of Keith. Apart from helping with the kids, I know Darcee loved having somone there to talk too while I was at work and I always felt so much better when I'd call Darc in the middle of the day and Debbie, Jenny and Katie would be over there spending time with her. Bill or "Bilshop" as we like to call him is equally amazing. He seems to have a sixth sense for stopping by when we need it most, just to see how things are going. There's been days when Debbie's been with the kids all day and Bill's been at work, but instead of going home to relax in the evening, they've come down to the hospital at night to bring me a meal and say hello to Keith. They always lift our spirits and there is no way we could have made it through the last 7 months without them.

We have also been overwhelmed by the small acts of kindness of so many friends, family members, and even perfect strangers over the last 7 months. Grandparents, Aunts, Uncles, Cousins and friends have sent so many cards and care packages for Keith and the kids. High school friends, who we haven't talked to in ages, have sent meals or cards. Ward members have offered meals and put together care packages for our family. Co-workers and former co-workers have sent gifts to Keith and the kids and have volunteered to babysit and even contribute their paid time off to me so that I could spend more time with Keith. Neighbors that we hardly know have stopped by to see how Keith is doing and to drop something off for our family. Distant friends and mere acquaitances have sent flowers and/or made constributions to cancer charities in Keith's name. Perfect strangers have overheard conversations at the hospital and have volunteered to pray for Keith by name. Pretty much everyone we know has sent us a kind email message, blog comment, text or phone call, reassuring us that they are thinking about Keith and are continuing to pray for him. We can't tell you how much these seemingly small acts of kindness uplift Keith and our family.

Darc and I try to stay on top of thank you cards but I'm sure that there are some we miss, but I can assure you, not a single act of kindness goes unnoticed or unappreciated. Despite the challenges of the last 7 months, we have been humbled and strengthened by the sincere kindness shown by so many to our family.

The Freedom of the Stairs

What is the use of climbing Mt. Everest? - "... if you cannot understand that there is something in man which responds to the challenge of this mountain and goes out to meet it, that the struggle is the struggle of life itself upward and forever upward, then you will never understand why we go."

Why do you want to climb Mt. Everest? - "Because it's there."

How will you get to the top? - "We will stomp to the top with the wind in our teeth."

- George Leigh Mallory (Responding to questions of his expedition on the first ascent on Mt. Everest)

Anyone who has ever been on a mountain knows both the anguish of the climb and the euphoria of the summit. I have never been on a mountain where I didn't want to quit - and I have quit, on occasion - too exhausted, too sick and too physically and psychologically depleted to complete the ascent. Nausea, malaise and weakness are common with altitude, and when that sickness sets in, the simple, rote task of putting one foot in front of the other becomes a menancing grind.

Having experienced that to some degree, I could not have been prouder of Keith than when Darc showed me this video - his conquering spirit on full display. It may seem a small task, climbing the stairs, but for him, it is anything but. Keith has limited mobility in his feet and legs right now, especially given the cumbersome casts that wrap his feet and extend up to his knee. Given how frail he is, the casts account for about 25% of his body weight. Aside from mobility constraints, he recently had another round of chemo, which means he's nauseous, weak, sleep deprived and generally just feels "yucky."

Sitting at the bottom of the stairs, already sapped from the poison in his system, he had every legitimate excuse to wait for Darcee to carry him up. Once he started up, tired and in pain, with Darcee right behind him, he had every opportunity to quit and nobody would have faulted him for it. Instead, he pressed on, "teeth into the wind" one conquering step at a time.

His expression at the top of the stairs says it all.

Every parent revels in seeing their children accomplish hard things, but it's especially rewarding when the child initiates the challenge on their own and perseveres to overcome it. Despite the challenges of this disease and its treatment, Darc and I feel so blessed to be inspired by Keith every single day. Every day he faces some new challenge, usually in tasks that are simply routine for most kids. But, despite his physical limitations and legitimate reasons to quit, he always endures and finds a way to prevail.

Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month

• Every day, 36 children are diagnosed with cancer.
• The average age of children diagnosed is six.
• More than 40,000 children undergo treatment for cancer each year.

At certain points during difficult things, there are two questions that enter one's mind .
One: What am I going to learn from this?
Two: What am I going to DO about it?

We focus a lot on Number One on our blog because we want to remember what we are learning while our number one priority is Keith. Once the intense part of Keith's treatment is over, we will be focusing as a family more on Number Two. In an effort to focus more on the "doing" even right now, I've compiled a list of ideas for any of us who would like to get more involved in helping children and their families fight against and cope with cancer. I'm positive I've missed several things, so if you know of something, please let me know!

1) Donate money for children's cancer research. Curesearch.org  If you donate $36 this month, you are entered into a drawing for some vacations. Also, donations are matched by sponsors this month!

2) Volunteer with a local cancer organization. Here in the Portland area, it's the Children's Cancer Assocation . You can volunteer for a fundraising event or a community event in support of families dealing with childhood cancer. If you aren't sure what's available in your area, you can start with the American Children's Cancer Organization, the largest grassroots children's cancer organization in the U.S.

3) Give the gift of music. Purchase songs on iTunes through MyMusicRX.org and iTunes will donate up to 5% of proceeds to the Children's Cancer Association. Other examples of gifting music to local children coping with cancer can be found here.

4) Participate in a Fun Run/Walk, Bike Ride, etc. There are so many out there. Here are a few:                
     a) Find a Curesearch Walk near you.
     b) You can walk or ride your bike to support the National Brain Tumor Society.
     c) Leukemia and Lymphoma Society's Light the Night Walk (in Oregon and Idaho)
     d) Hood to Coast Relay (supports the American Cancer Society)
     e) Crowdrise and Runner's World have compiled a list of cancer charities with a running connection here.

5) Donate your hair. Each organization has different guidelines which you can check out by following the links below. My sisters and I are planning a hair-cutting party when Keith finishes up his treatment next Spring. (I opted OUT of the family head-shaving party but I'm opting IN on the hair donation.) If anyone out there would like to join us, start growing out your hair!
     a) Locks of Love For children who have lost hair from various types of medical conditions/treatments.
     b) Childhood Leukemia Foundation
     c) Pantene Beautiful Lengths For all cancer patients, not necessarily children.

6) Create your own event. My friend Alison and I are in the very early stages of creating a Family Fun Run/Walk in our area. If you are interested in volunteering, sponsoring, and/or participating, let me know. More details to come when things slow down a wee bit. Number one priority right now is Keith.






Keith, by the way, is sleeping away as he receives Round 4 of chemotherapy. He has been doing great. He's standing a lot more and walking a little bit with help. He has one purple "boot" and one green "boot" this week and he loves showing them to everyone. He and Cole cannot stop talking about Halloween. Keith changes his mind every second about who he is going to be.  It's been so great to see him be a kid and enjoy feeling so well these last 2 weeks. He's excited to have his Dad spend the night with him tonight in the hospital.
Also of note, Keith ate a Dove dark-chocolate today. The whole thing. I was self-medicating this afternoon when I offered him some. He shared mine and then ate a whole one by himself! I'm convinced chocolate is for everyone and heals everything.  I've got to find a way to fit chocolate into a fundraising event. Hmmm...

Clear Scans

As Darc mentioned in her last post, Keith has had a great week, culminating today with a clear MRI report of both his brain and spine. The radiologist who read the report did not note any indications of suspicious enhancements. We have not met with the neurosurgeon yet to go over the scans, but the language in the report was clear. We are so grateful to the many family members and friends who have joined us in prayer and offered their well wishes in anticipation of the upcoming scans. We are especially grateful to our Heavenly Father for keeping Keith in His constant care.

Darc and I had a conversation last week after Keith got out of the hospital. We were talking about how most of the news we'd received over the last few months was negative - i.e. that Keith was showing some signs of hearing loss, that restoring his mobility would be a long and painful process for him, and that the chemo was making him sicker than expected. In an effort to "rally the troops" we both agreed that we were due for some good news, that the scan results would be promising, and that, in the end, that's all that matters.

They will continue to do scans every 3-4 months. Keith is getting excellent medical care and is supported by a dedicated army of family and friends. We are still in the early innings of a very long game and we don't expect his treatment to get any easier, but we are encouraged by these results and, at the end of the day, we like the team we've got on the field, especially the patient.

Good Times

The following video is just Keith being Keith. Sunday night at dinner, Cole and Keith were cracking each other up for close to 20 minutes. They alternated quoting favorite shows and saying things "tasted like chicken" or "tasted like Fidget" (the bat). If you don't get the humor, it's only because you're not 3 years old.
I was too busy enjoying the hysterics to catch the best part but I caught a glimpse of the moment on video.

Keith has had a really, really good week. He received another transfusion last week and now that his counts across the board have rebounded, he is doing excellent. He has gained over a pound and has now broken the 26 pound barrier, which was the minimum goal set by his nutritionist. We attribute the weight gain to his crossover from water to apple juice. We've pushed it for awhile because of the caloric benefit and he decided 2 weeks ago that apple juice was for him. Now it's all he wants. We'll worry about the dental repercussions later. He has also lost all his hair again, but he's still as squeezable as ever and it just allows better access for kissing his sweet head.

Keith has been busy coloring, drawing, painting, going to the park and playing with Grandma B., Sydney and Evie, and Caden, Hunter and Julie. He LOVES visits from his favorite people.

Keith's "boots" have gone from purple to white to blue and he'll get a new color tomorrow. The casting is working, thankfully. The P.T. wasn't sure it would work after the first week when Keith still had a tremendous amount of tightness in his heel cords. But last week, we saw a huge change in his range of motion so that is very good news. Keith can stand in his casts and walk with help. It is amazing to us how quickly things can improve, especially in the body of a small child.

Cole and Ally continue to bring a dose of normalcy and comedy into daily living. Cole thinks he's the next Nigel Barker. He insists on taking pictures constantly. Exhibit A:

He makes specific requests for the "look" he wants to capture. The following assignments to me were, Exhibit B: A funny face

Exhibit C: A mouse

Exhibit D: A Monster

Exhibit E: A Ghost

His other requests for a Vampire, a Zombie and a Mummy were either too off-center or much too scary to include. I'm willing to hire someone else to be his "model". I have enough creepy photos of me to last a lifetime. If anyone is wondering what Cole, Ally and I do while Brent and Keith spend the night in the hospital, it's usually something amazing like allowing Cole to commandeer my camera.

Cole also likes his picture to be taken. Exhibits F, G and H:

He also casually informed me this week, and I quote, "Mom, Caillou is a wuss. I don't want to be a wuss like Caillou." For those out of the PBS loop, Caillou is a nice boy with a nice little show that Cole has only seen a handful of times. For a moment I wasn't sure I had heard him right. Of course, no 3 year old would deduce something like that on his own, so my finger is pointed directly at his Dad, who undoubtedly brain-washed our impressionable preschooler. Brent insists he said it one time in passing, but Cole and Keith have remarkable memories for many things, especially opinions spewed under the breath of their all-knowing Dad.

Cole and Keith's OBSESSION with Superheroes has been passed to Ally. Ally can point to and correctly name the following heroes: Spiderman, Batman, Superman, Thing, Thor, Hulk, Ironman, Captain America, Wolverine and the following villains: Joker, Lizardman, Rhino, Vulture, Abomination and Magneto. Cole and Keith are experts and are apparently excellent teachers on the subject. Ally is their attentive and absorbent pupil.

Please take note of her Princess pajamas. Never say I didn't try to feminize her. Perhaps I should start introducing Wonderman, She-Ra and the Invisible Woman into her vocabulary.
Ally had her 2 year check up last week. She will tell anyone who will listen about her "poke" and her "shocks" from going to the "docor".

Currently, Brent and I are waiting out Keith's quarterly, 2 1/2 hour brain and spine MRI. This is the best diagnostic tool to tell us how chemotherapy is working. Regardless of the results, Keith will continue his 9-cycle chemo protocol.We are hoping and praying for good things. We feel good about it. We will meet with the Neurosurgeon tomorrow for results and Brent has offered to post the news then.
Other than that, we are making the most of every good day Keith has until he goes in again next week for another Hospital Admit/Chemo boost.