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.

Good Timber

The tree that never had to fight,
For sun or sky or air or light,
But stood out in the open plain,
And always got its share of rain,
Never became a forest king,
but lived and died a scrubby thing.

The man that didn't have to toil,
To gain and farm his patch of soil,
Who never had to win his share
Of sun or sky or light or air,
Never became a manly man,
but lived and died as he began.

Good timber does not grow with ease,
The stronger wind the stronger trees,
The further sky the greater length,
The more the storm the more the strength,
By sun and cold, by rain and snow,
In trees and men good timber grows.

Where thickest lies the forest growth,
We find the patriarchs of both,
And they hold council with the stars,
Whose broken branches show the scars,
Of many winds and much of strife,
This is the common law of life.

- Douglas Malloch

This has always been one of my favorite poems and I have referred to it often when faced with challenging circumstances in life. Although, looking back, prior to Keith's diagnosis, my life was, admittedly, very easy. This last week has caused me to dust it off once again, in an effort to reassure myself that these near-term challenges will only serve to strengthen me and Keith for years to come.

Most of the friends and family who follow our blog know that Cole and Keith were born prematurely. The circumstances preceding their emergency delivery centered on Keith's growth restriction in the womb. He was, essentially, pinned down with nowhere to go. And, because of that, he wasn't getting the nutrients he needed in the womb to grow. Once delivered though, Keith thrived. The Doctors attributed his resiliency to his struggles in the womb. In their view, Keith had to fight very hard in the womb to get every critical nutrient he needed, and once he was delivered, he found life on the outside easy compared to the daily struggle he faced on the inside. Consequently, despite his small size and early birth, his heart and lungs were abnormally strong, allowing him to quickly prevail over the common complications of premature birth. It was there in the NICU that the nurses affectionately began to refer to Keith as Tiny Mighty, which has since morphed into his official superhero name, Keith the Mighty.

Keith's resiliency has been tested repeatedly throughout each phase of his treatment and it was on display again this last week. Keith went in for a blood transfusion on Tuesday to boost his red blood counts following his latest cycle of chemo. Before starting the transfusion, Keith had a low-grade fever that progressively got worse throughout the day. Given that his white blood cell counts were so low, the Oncologists elected to admit Keith to the hospital for 2 days of antibiotics and monitoring.

The first day went okay. Keith's fever spiked a bit and he was a bit nauseated as evidenced by occasional bouts of vomiting. For the most part though, this was expected. His spirits were good and even though he was tired, he was playful and happy as usual. The problems started about 3am that morning though. Keith got a bloody nose. Not a big deal for most kids. But, when your platelets (the part of the blood that leads to clotting) are really low, a bloody nose can be just as dangerous as any other open wound. I was in the room alone with Keith and I tried to stop it in the usual way with a Kleenex and having him lay back on his pillow. The bleeding wouldn't stop though and I could hear him taking large gulps to try to clear his throat. Soon, he was vomiting mouthfuls of blood. The blood was still gushing from his nose as it came out of his mouth. He began choking on it, since it was coming too fast for him to clear it. I was holding up his head with one hand and holding a vomit bag with the other, so I couldn't get to the nurses call button to alert someone. Instead, I just started yelling, "I need some help in here! I need some help in here!", hoping that someone at the nurses desk outside would hear me. I wasn’t panicked, but I was scared, particularly when he'd start choking on the blood. When the nurses came in, there was blood everywhere. He was sobbing uncontrollably at that point and the blood kept coming. The nurses put all of the necessary monitoring equipment on him and ordered an immediate platelet transfusion. They had me squeeze his whole nose hard for 15-20 minutes to help with the clotting. It hurt Keith. He hated it, but it was the only way for the bleeding to stop. After 20 minutes of holding his nose and the platelet transfusion, the bleeding stopped. He ended up losing so much blood that he needed another red cell transfusion despite just having received one the day before. All this from a simple bloody nose.

Keith looked pale and collapsed in exhaustion. Despite him and his bed being covered in blood, I just covered everything with towels and let him rest. When the nurses left the room, that was a new low point for me. Keith has suffered so much during this treatment, but never so traumatically and intensely as right then. I was discouraged, but I was glad it was me who was there that night and not Darcee. Keith's bed looked like a murder scene and the simultaneous choking and throwing up of blood would have been enough to rattle even the strongest Mom. Darc is usually the one taking Keith to appointments he doesn't like. She usually has to be the bad guy that helps Doctors do things to Keith that hurt him. I know she hates it, but she is so strong. That night though, I was glad she was spared the experience.

I mentioned that this was a new low point for me and I thought it would be for Keith too. I was worried that he had been so intensely traumatized from seeing and tasting so much blood that it would take him a while to recover from the experience. I was wrong. Within a few minutes of settling down, he asked me to turn on one of his favorite movies, The Great Mouse Detective. As if the previous experience never happened, Keith proceeded to laugh and joke about his favorite parts of the movie. There is a bat in the movie named Fidget. Keith cracks up anytime the bat is involved in the movie. Laughing, he says "Hey Dad, look at that silly Fidget, he is a funny bat! Look Dad, Fidget is dressed up in Olivia's clothes, isn't that funny!" When the movie was over, he drifted off to sleep, seemingly unfazed by what had just occurred.

This started about 4am on Thursday morning and finally, around 7:30am, he was back asleep. I sat there, looking out the window in his room, frustrated and worried. That morning, I already had emails piling up at work and co-workers trying to reach me for last minute comments before a meeting. I couldn't have cared less at that moment and their demands only added to my frustration. I can't blame them, there is no way they could have known about the night I just had, but it still didn't stop me from sending a few curt email responses to their questions.

During his vomiting spells, he threw up his feeding tube. Given how often he throws it up, we decided, in consultation with the Doctors, to have a more permanent feeding tube installed directly in Keith's stomach. Keith has shown no signs of wanting to eat and given how long he still has left to go on his treatment protocol, we agreed that a more permanent solution would solve the frequent problems with the nose feeding tube. This solution introduces some infection risk, but the Dr's thought the risk was small and that Keith would be better served with a permanent tube. Keith is scheduled to have the permanent tube placed in mid-September. Until then, the Doctors wanted to use an IV solution to keep Keith nourished rather than torture the kid by putting in another temporary feeding tube. We thought this was a good idea and assured Keith that he was done with the nose tube.

However, starting late Thursday night, Keith developed an allergic reaction of some sort. His face turned bright red. His ears, lips, nose and eyes swelled up like a balloon and he was covered in itchy hives. The Doctors and nurses could not figure out what was wrong. Eventually though, we figured out that every time we turned on the IV solution, he would start the allergic reaction and it was getting progressively worse. The Doctors and nurses said that they had never seen a kid have an allergic reaction to this type of IV solution. Keith was just that lucky. He was miserable that night. He couldn't see. He was constantly itching and the reaction gave him both headaches and an upset stomach. Finally, after shutting of the IV once and for all and giving Keith both Benadryl and steroids, the reaction subsided. This made for another great night of sleep though for both Keith and me.

Given his reaction to the IV solution, there was no other choice but to reinsert the nose feeding tube until the permanent one can be placed. This is always torture for Keith and for us. We have to restrain him while the nurses thread the feeding tube up his nose and into his stomach. Darcee was the lucky one who was there for it this time. After re-inserting the feeding tube, Keith then had to go to physical therapy to get his recasting done. So, he was tortured some more when they stretched his feet to the point of extreme pain and recast them for another week.

The good news during this time though was that Keith's fever broke and after 2 days and 2 nights of torture, he was able to go home for the weekend. About 3 am Saturday morning though, Keith got sick again. Darc and I went into his room and held him while he threw up. As if he hadn't suffered enough already, he threw up his feeding tube again. Usually, this means a trip to the emergency room so that trained nurses can put it back in. I wasn't going to put him through that though, not after all he had been through all ready that week. Darc and I talked and we agreed that we had seen it done so many times that we could probably do it ourselves without hurting Keith. I said to Keith, "Buddy, I know you hate this, but we gotta put this tube back in. Do you want Dad to try to do it, or do you want to go to the Doctors to have them do it?" He said, through sobs "I want Dad to do it." Darc held him and I thread the tube back up his nose and into his stomach. Thankfully, it was surprisingly easy and Keith fought/complained less than he ever had. Darc and I did the usual checks to make sure it was in the right place in his stomach and went to bed feeling pretty good about our medical qualifications.

It had been a rough week and we were both happy to have everyone home. We don't know why, but 2-3 nights in the hospital feels like 2 weeks.

Darc and I try to be honest on this blog and the challenges of Keith's treatment are real and unrelenting. But the intent of this post is not to showcase the misery of Keith's treatment, in fact, it is quite the opposite. It is to show that despite the misery of this week and many other weeks, Keith is not miserable. He is a happy and playful 3 year old. His ability to forget pain and find joy in the moment is truly unsurpassed. His resiliency is simply incredible. He can suffer so greatly one moment and turn around the next and be as happy as if it never happened. He never complains. He never asks why. He never shows bitterness toward Cole and Ally in seeing them do so many things that he can't, but instead he finds happiness in watching them play. Despite his lack of mobility, he loses himself in pretend worlds of chasing and fighting bad guys, just like Cole and Ally. He may scoot instead of run. He may shoot his spider webs sitting down instead of jumping from furniture, but he finds the same joy in life as any other 3 year old would.
In seeing how he handles this treatment so well, I often think that this ordeal is harder on Darc and me then it is on him. He is just a remarkable kid in his ability to endure suffering, forget and move on. With each new challenge, Keith seems to get physically and mentally stronger, with a renewed capacity to endure through it and I know, without a doubt, that as hard as this treatment program is on him, that it is giving him an internal strength that will serve him well throughout his life.