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.

In a nutshell

Here goes my lame attempt at catching up on our blog...

This last round of chemo for Keith has been the easiest thus far. Partly because we are getting the hang of how to best medicate him during the day and at night and mostly because one of the chemo drugs was cut in half this time which obviously lessened the affects on his body. They cut the dose in half because of the damage it is causing Keith's hearing. We were told months ago to expect him to need hearing aids due to both radiation and chemotherapy and we've reached that point. Because he still has several months to go in treatment, they felt it wise to reduce his dose and lessen the chance of further auditory damage. We have chosen to wait on fitting Keith for hearing aids. This will be a lifelong thing for him and we want it to be as positive of an experience as possible. He hears fine one-on-one right now and since he's not in school it isn't too much of an issue yet. Besides that, Keith is doing incredibly well. He travels all over the house on his own accord. He still mostly scoots but he has plenty of energy to scoot all day long. In fact, he prefers it to being carried. We love to see him embrace his autonomy and get himself to where he wants to go. He has adjusted to his new "boots" (Ankle-Foot Orthotics--A.F.O's) and wears them during all waking hours which was our goal. (At night he wears a pair of old casts now transformed into splints.) For awhile, that was a challenge but like everything else thus far, Keith has overcome that obstacle. 

Keith and I during his first of two blood transfusions last month.

Keith, discovering that part of his new AFO's are magnetic, thus proving their Superhero-ness!

Keith embracing his new best form of P.T. Yes, we let him ride in the house and anywhere else he has energy to ride!

In addition to cramming himself in strange and tight spaces, Cole continues to crack us up every single day with his delightful insights about life. For example, "Dad, does eating Smarties make you smart?"

"Mom, do you like marshmallows in your cereal? I like marshmallows in my cereal. Uh-huh. They're awesome."

"Dad, I'm just going to sit here in front of the fire and think about my Superheroes."

"Mom, who do you think would win between Iron Man and Dormammu?"

"Dad, who do you think would win between Rudolf and Santa?" (These conversations can go on for several minutes and mostly without Cole pausing to take a breath.) He's also mildly obsessed with the number 4 now that he is 4 years old.

I'm wildly obsessed with him. He makes me laugh every single day.

Cole squeezing "Baby Eddie".

Cole meditating about his Superheroes.

And Ally, where do I begin to describe this beautifully difficult creature? She absolutely insists on dressing herself which often gets her in situations like the following two pictures. She refuses any help and apparently prefers to tie herself in knots rather than accept our assistance. And yes, often her underwear is outside her clothing because she crams both legs into one leg-hole. But hey, she did it herself, right? Her favorite catch-phrase is "I DO IT!" And yes, it's always spoken in capital letters.

Ally loves to pretend she is going running with my gear. We all say goodbye and then once she reaches the door and comes back she announces to everyone, "I'm home! Ally home!"

For all her individuality and "personality" we'll call it, she is perceptive of the needs of others. Whenever Keith is crying for a drink, she's the first to find his cup and bring it to him. And when Brent is icing his foot (more on that in a minute) she is the first to say, "What happen Dada? Yo foot hutt?" Lately, she's the only one to provide Brent any sympathy over his busted ankle from an overly competitive Turkey Bowl game between the Burnett siblings.
I must warn you, these pictures may haunt your dreams. Proceed with caution...

Basically, Brent jacked up his ankle pretty good Thanksgiving Day. He's still toughing out the pain but I can tell it still hurts pretty badly, especially now that the Vicodin from his ER visit has run out. I've scheduled an appointment with an Orthopedic Surgeon next week in hopes that we can figure out for sure what to do with his club that used to be a foot. He's still been trying to help out as much as he can with the kids and he was even on a ladder last weekend hanging our Christmas lights! I think he's trying to prove he's not a complete invalid  because he knows I'm not happy about his ankle. It's obviously not his fault but I just can't be a nurse for anyone else right now. Especially the one person who helps me the most! So, sadly for him, I haven't had much sympathy for him. I know. I'm a mean wife. Every woman has a breaking point and I think I found mine this last holiday. Is 2011 over yet? I am ready for a new year.
To lift my spirits I found these photos that I forgot I took a few weeks ago.

 It's a good thing I have so much to be grateful for because otherwise I might go insane. Seriously. Look at those 3 faces. How could you feel anything but joy as you look at those children?

I also found these pics of two of the most amazing grandparents and parents we could hope to have:

Grandma B. reading stories to the grandkids after serving an incredible Thanksgiving feast. Her grandkids rightfully adore her.

Grandpa Smart roughhousing with Ally. She kept screaming, "Again! Again!" Thank goodness for a Grandpa with such youthful energy.

With all the challenges and uncertainty that 2011 has brought, I've never been so reflective and humbled. More than ever, I am grateful for all that I have in my life. Especially the small things, like a quiet conversation with my husband and time spent playing with my kids at home, and even a halfway decent night of sleep. I'm grateful for the perspective I've been given this year. And while there are things I might hope to put behind me about this year, the one thing I hope to cling to is the gratitude I feel for every single second of every single day I have with my family and those I love the most. Things can change so quickly. We've witnessed it in our lives and in many others' lives recently.  At the risk of sounding trite, I hope to never take any moment for granted. It doesn't mean I can learn to enjoy the moments when Keith is suffering. It just means that when there is even something small to be grateful for, I find it. And there are never only small things to be grateful for. Even I can't be that dramatic. I know there are many amazing gifts in my life and remembering those is the key to happiness no matter what happens.