Here Comes the Sun

I've spent most of January feeling overwhelmed and underaccomplished. When everyone around me has been setting goals for personal improvement, I've felt like it's all I can do to get through each day, mostly due to exhaustion. At some point, one year of very little sleep will catch up to you. I'm caught and very, very tired. Even if Keith slept at night (which is rare), Brent and I still have an arsenal of meds to administer around the clock. Here's a sample of a typical night of meds this month. I snapped a picture before bed when Brent questioned the 8 syringes in my hand as I headed upstairs.

For the first few days after Keith's stent placement, we were giving medication 27 times every 24 hours, including cleaning syringes. Pretty time consuming.
Add in the fact that I spent several hours this month working out kinks with pharmacies and our insurance company. Our insurance company has been great, but one major issue we've encountered has been having two boys on the same plan with the same last name and birthdate. By computer default, every claim is automatically processed under Cole's name because "C" comes before "K" in the alphabet. Needless to say, I've spent many hours with my new BFF, Nikki, in customer service, because I have to call her regarding every single bill to make sure it gets reprocessed under Keith instead of Cole. Clearly, this is something I would much prefer to cut out of my "to-do" list.
Obviously, there's still all the other things that accompany the duties of running a household. I was never very good at most of those things anyway, but now it often seems impossible to keep up. This would all be one thing if I was home during the week, but Keith and I are still spending at least 2 and sometimes 3 days each week at the hospital. I prefer to spend time with Cole and Ally (and quality time with Keith) rather than check things off my list in what feels like limited time at home.
Basically, I've been feeling like I'm in the trenches digging but I never get anywhere. I'm pretty goal-oriented and there's nothing I hate more than feeling like I'm never getting anything checked off my list.
OK. Blah, blah, blah. Enough complaining.
Fast forward most of the month to this week...

There was finally a sunny day so Cole and Ally and I got out while Keith was sleeping off a rough night. Being true Oregonians, Cole and Ally had to wear sunglasses at even the slightest hint of sunshine.

I couldn't help but sing the Beatles song, "Here Comes the Sun" in my head. Brent always (jokingly) sings that to me when I'm in a bad mood. (I know. Like that EVER happens, right?) Brent always inserts "Little Darcee" for the "Little Darling" part. Makes me smile every time. Mostly because he can't sing. Nor can I.
But anyway, the lyrics seemed especially appropriate this week. Find them here. The last year and especially the last 6 weeks have felt like a "long, cold lonely winter" but I also "feel that ice is slowly melting," even if it "seems like years since it's been here."  I can hear Brent singing now, "Here Comes the Sun, Little Darcee!"  Just typing it makes me laugh! But seriously, the sun IS coming.
Keith only has two treatment cycles left. 2 out of 9. That is huge! And while I realize we still have a lot of Physical and Occupational Therapy ahead to get him walking and eating, and we still have to get the whole hearing aid thing figured out and we still have unknowns to deal with as far as future help in school, at least we can see the end of the tunnel to treatment. At least Keith will only improve after that final cycle finishes up. No more chemo to knock him back down. He can only go up from there. April will be here soon and it will hopefully be accompanied by some real, live sunshine.

Other rays of sunshine:
1. Keith has had the desire to walk a lot recently. He holds on to our fingers but only for balance, not for weight-bearing. He even tried "running" this weekend. It was so sad and so awesome at the same time. I love his spirit.
2. Keith gets his stent removed already this week! I cannot wait for his bladder to stop spasming every time he urinates. Clearly, he will be even more relieved, but it's a pretty helpless feeling to watch him squirm in discomfort every two hours.
3. Brent is loving his new job. He wasn't looking at all, but something just fell into place that just felt right and he started 2 weeks ago. He's working longer days, but he doesn't have a commute and I love the excitement in his voice when he tells me about his day.
4. Cole and Ally are getting along so well. We have so much fun playing Cole (AKA "Red Dino"/ "Red-Jet Starship") and Ally, (AKA "Supergirl"/ "The Princess") verses Mom, (AKA "Green Witch"/ "Bee Stinger"). All names created by Cole. Cole tries to come up with creative names for Ally, but she INSISTS on Supergirl or Princess or sometimes simply "Pretty". Quite an imagination in that kid. The premise of these games include me turning into the Green Witch or the Bee Stinger and trying to capture, find, chase or tickle Cole's Super-hero-self and his stubborn side-kick. All the while, we get to come up with cool, unrealistic superpowers for ourselves. While these certainly aren't games of an orignal nature, we can't get enough of them. Simplicity in life is divine.

Ally in typical fashion: self-selected outfit with uncombed, crazy hair.

Red Dino in action.

Here's SuperDad in action showing Cole how to roll out dough for homemade pizza. Brent and his brother Clint slaved all weekend on finishing up our master bathroom remodel we started last January. More on that to come. Can anyone else believe it's February this week?!!! 

Much better late than never

We finally got to celebrate Christmas earlier this month! We had to squeeze it in between Keith's MRI at the beginning of the week and his sedated hearing exam and urology pre-op at the end, but we all enjoyed every second.
















































In addition to Christmas celebrating, we got to spend some time with Cousin Evie and the Smart Family, including Grandma Phyl which was special. It was a quick visit, but fun.





































Aunt Darel and Aunt Chels spent New Year's Eve with Keith and I at the hospital. Pretty sure we were breaking fire codes with so many of us crammed in such a small room, but it was fun. Keith would NOT let them go home that night, so the nurse let his Aunties stay. Chels and Darel slept on the window seat and I slept with Keith in his bed. A night to remember to say the least.

















January has been a very, very full month. I'm going to do my best to catch up!






Keith and I are hanging out in the hospital this week following insertion of ear tubes,
a kidney stone blast and placement of a kidney-bladder stent, all of which occurred yesterday afternoon. He's also received a blood and platelet transfusion while we've (conveniently) been admitted.


Keith went through another round of chemo last week which went smoothly. I know we say this all the time, but seriously, he is a trooper. We thought he would freak out coming back here since he really hasn't had much of a break. We've spent 2-3 days each week at the hospital since his discharge at the beginning of the month and he's been admitted twice. I'm positive he's sick of this place but very rarely complains. He's a very content little guy. He only needs his favorite story book, his movies and his Superhero and "bad guy" toys and he's good to go for however long we end up staying.


We're hopefully out of here today but we'll be back on Friday for a clinic visit, labs and likely another transfusion. But that should keep us out of here for awhile. We can only hope!

While Keith was at home, Grandma Smart, Aunt Chels and I snuck the kids out and had some fun:

New Year, New Cheer

"Life is a storm my young friend. You will bask in the sunlight one moment, be shattered on the rocks the next."

- Alexandre Dumas, The Count of Monte Cristo

Never has this quote been more true for us than with Keith's cancer treatments. Particularly when his immune system is so compromised, his condition can change daily and his prognosis can go from grim to great in a matter of hours.

Well, after nearly two weeks of being "shattered on the rocks," it's finally Keith's turn to "bask in the sun"...at least for a few more days until his little ship is besieged again by the storm of chemo.

Keith finally came home from the hospital yesterday afternoon and it is so nice to be home together again as a family. It's amazing to us how much happiness we feel in the simple pleasure of being together as a family under one roof.

As happy as we are that he is home, we are even happier with his MRI results today. His scans looked great, with no signs of remaining or recurrent tumor. Though his treatment often creates the kind of difficulties we've experienced over the last few weeks, the treatment is working and, despite it's challenges, we have to remember that the ends justify the means.

We are again humbled and grateful for the many calls, emails and messages we've received over the last couple of weeks while Keith has been in the hospital. We sincerely appreciate the thoughts, prayers and loving concern that so many have expressed on Keith's behalf.

Keith is doing great, seemingly oblivious to the two weeks of torture he just recently endured and is home again, happy as can be. His physical resilience is impressive but it's his God-given ability to suffer and forget that makes this treatment bearable for us all. We are truly grateful for Heavenly Father's healing hand in Keith's care and that Keith's tiny shoulders are constantly strenghtened to bear the burdens placed upon them.

Still Waiting

I'm not really sure where to begin but I'll try and keep this brief.
Keith continues to have fevers. They found an infection in his lungs that they believe to be fungal and/or viral. They are treating him for both. They also found a large kidney stone in his CT scan earlier this week. He was scheduled this morning to have a kidney-bladder stent placed and to do a B.A.L. on his lungs to try to get a fungal sample but his breathing took a downturn early this morning and the anesthesiologist and other team members felt uncomfortable sedating him. So those procedures are on hold.

Keith's breathing has improved greatly since a nebulizer treatment, a dose of steroids and the use of a nasal cannula. He continues to sleep soundly today which is surprising considering the amount of commotion that has been going on. I think he must be absolutely exhausted from the examinations of 6 specialists yesterday: ENT, Infectious Disease, Urologist, Pulmonologist, Anesthesiologist and of course his Oncologist. It was a regular parade here yesterday.
He is DONE with people touching him, listening to him and even looking at him. His go-to phrases yesterday were, "Who's that?" and "What are they doing?" or "Hey! Let me go." In reference to the medical providers, he just told us that "I just like the boys." He does seem to do better for males than for females, generally. He had a male nurse the last 2 nights that was awesome. He could take some stealthy vitals which was helpful since we were trying to keep him asleep because he couldn't drink anything for 6 hours prior to his scheduled anesthesia. This is tricky for a kid who has become one with his apple juice because he thinks it wards off nausea. I was pretty stressed about how I was going to deny him his juice all night if he didn't sleep well. Fortunately, except for a few 10 minute intervals, he slept comfortably. It probably helped that we cooked up a regular dosing schedule of anti-nausea meds and narcotics. While I discourage medication generally, I certainly respect its place and use it now whenever necessary, especially if it means less misery for little Keith.

Now, the good news. While Keith has had an ANC (type of white blood cell that fights off infection) of zero for many days, today he rose to a whopping .15. Wahoo. Even though it's small, at least his body is starting to produce those desperately needed cells to fight off infection.

In order for Keith to go home, he must:
1. Show that his blood counts are rising
2. Stop having fevers
3. Breathe well on his own

When those things happen, we can go home and celebrate Christmas. Until then, it's still the middle of December at our house so please don't mention to our 4 year olds or our 2 year old that Christmas has come and gone. If you come to my house on Valentine's Day and my Christmas decorations are still up, at least now you'll know why. Seriously. We better be out of here by then...

Cole and Ally are taking everything in stride. Brent and I miss seeing them regularly. We see them a little in the afternoon and then one of us puts them to bed at night while the other one stays with Keith.
Fortunately, the kids are loving the time with G and G Burnett. Cole even climbed in bed with Grandpa this morning and fell back asleep for a few hours. I don't know what we'll do when they leave. They have been such lifesavers this holiday. Too bad they're going home with unwrapped Christmas presents. Awesome hosts we've been.

Just for laughs, I'll close by sharing two recent conversations at our house.

Cole: "Dad, my legs are tired."
Brent: "Well, sometimes when you run around a lot and use your legs, they get tired."
Cole: "Well, I talk a lot, but my mouth never gets tired."


Cole: "Ally, you're a bad guy."
Ally: "No! I pretty!"

Cole: "Yeah, you're pretty. But you're still a bad guy."

Christmas Can Wait

This year, Darcee and I only asked Santa Claus for two things: 1. That we could spend Christmas together as a family at home and 2. That Keith would be feeling well enough to enjoy it.

We thought we'd been pretty good all year long and that we weren't asking for too much. Unfortunately, those wishes must have been in short supply this year, because Santa couldn't deliver on either.

I'm writing this from the hospital, where Keith has been since Thursday afternoon. In a repeat from a few months ago, Keith developed a bloody nose Thursday morning, which bled, and bled and bled, complete with vomitting and the all too familiar nose squeezing torture. All of this started at home but ended with an immediate platelet transfusion at the hospital. After the transfusion, Keith developed a fever and was generally just feeling miserable, so he was admitted to the hospital on Thursday afternoon. Keith's white blood cell counts are virtually non-existent right now, so he doesn't have the natural mechanisms to fight off any infections. Consequently, it's almost impossible to pinpoint what's actually wrong with him when he develops these fevers, so they run him through a series of antibiotics and watch him closely to see what develops.

We knew when he was admitted that it would be for a minimum of 48 hours, that's the standard. Of course, Darcee and I being the optimists that we are, we immediately started the countdown, thinking, "well, at least he'll be out of here on Christmas eve." Christmas eve came and went, as did Christmas day. The fevers persist and we remain waiting, taking turns with Keith at night and splitting time at home during the day. The Doctor thinks we may go home on Tuesday, but we're not holding our breath. As long as Keith has a fever, we'll be here.

Fortunately, Mom and Dad are spending this week with us and they have been a huge help with Cole and Ally during the day, allowing Darcee and I to recoup a little bit from our overnighters on the hospital recliner. I'm not sure how we would have gotten through the last few days without them. We've also brought Cole and Ally down to the hospital during the day so we could spend some time together as a family. They've been great, patiently playing in the little play room or watching movies with Keith in this confined space. Keith hasn't felt much like having visitors, but he still loves to see Cole and Ally when they're here and we know it helps him to feel somewhat more at home.

The hospital stay is one thing, seeing Keith so miserable for so long is another. He's been sick before during chemo and has stayed a couple of extra nights in the hospital, but not like this and not for this long. I think his little body has been through so many rounds of this poison that it's just getting harder and harder for him to rebound when his blood counts are so low. They'll come back though and he'll get better, at least until the next round.

One of my favorite Christmas movies is Rocky IV. Most people don't think of that as a Christmas movie, but you forget that Rocky trains through the winter to fight Ivan Drago in Russia on Christmas day. What made Rocky such an admirable character was his unmatched ability to take a beating. Anyone who's watched the Rocky series knows that Rocky was never the best technician, the biggest, the strongest, or the hardest puncher. He won simply because he had more heart than his opponents and was willing to outlast them in wars of attrition, slowly chipping away at bigger, stronger foes, while simultaneously absorbing all that his opponents could dish out.

I often think of Keith as our little Rocky. He's undersized and outmatched, but round after round, he stands toe to toe and trades punches with a very formidable opponent. Every round he gets knocked down. Every round he gets back up. This round is no different. He's staying on the canvas a little longer this time, but he'll struggle to his feet soon enough and from somewhere find the strength to continue the fight.

Santa couldn't deliver this year, but that's okay. Darc and I have learned not to sweat minor setbacks in a major operation. Sure, the timing of this hospital stay kinda sucks, but we try to keep our focus on the end goal and not get too discouraged about things like this. Given how he responded the last time he had this particular cycle, I think we both kind of prepared ourselves to spend Christmas in the hospital. Despite being here, we are very happy to see that the pediatric oncology floor at the hospital is almost empty. These kids suffer through so much and we're so glad to know that most of them are able to enjoy Christmas at home, with a much needed reprieve from their intense and grueling treatments.

In the meantime, we're fortunate that our kids are old enough to get really excited about Christmas, but still young enough to know nothing about calendar dates. We'll keep waiting, and when Keith is home, we'll have our Christmas, even though it may be in January.