Taking Advantage

We have taken full advantage of Keith's energy level and activity tolerance these past 2 weeks.

We also took full advantage of Aunt Chelsea's Spring break from her graduate program in London. We put her straight to work.
She helped us run errands and go to the park, the library, and the Zoo.

Chelsea teaching Ally how to crack an egg. She is a brave auntie.

It's possible Cole only went to the Zoo for the cotton candy.

But he did let Ally have her fair share. And Keith surprisingly ate some too. You have to start somewhere right?

We managed to see a few animals in addition to the bottom of an empty cotton candy bag.

Chels carried Ally a large chunk of the time.

We also had fun just hanging out at home with Chels.

Note to Cole: 4 out of 5 Dentists recommend wearing pants while brushing your teeth.

Chelsea's week with us culminated in her 30th birthday bash. More on that to come.
Right now, we're packing up for Keith's FINAL round of chemo.

Bring on Cycle 9...

Glimpses

When I asked Cole what he learned about in church recently, all I could get out of him was something about hunting and capturing a Leprechaun. He quickly changed into something green and put a hat on his head for protection and insisted that Keith and Ally follow suit.

Even though he wasn't feeling very well at first, Keith eventually got into the fighting spirit with his green fighting gloves and his green shirt.

 Ally was severely reprimanded for not wearing green, but her mad fighting skills eventually overrode the need for green and Cole allowed her into the fray.

Cole continued the hunt with Grandpa Burnett in Yakima this week. Grandpa helped him set a trap with some cookies but that Leprechaun was too clever! He stole the cookies before Cole and Grandpa could get there in time to catch him. Maybe next St. Patrick's Day... Cole and Grandpa are already planning their modifications to the current Leprechaun trapping system.

Keith had a rough clinic day last week, complete with an abnormal amount of car-vomiting, replacing his feeding tube without any lubricant in the car, and stripping down naked in a frozen parking garage so I could change his clothes. It was a disastrous morning for us both. And that was before a 7 hour day at the clinic. But his transfusion went smoothly and ever since, he has been a new kid. I give most of the credit to his grandparents. Ever since we learned he would have 3 weeks off from the inside of any medical facility which has only happened 1 other time in 13 months, and since we learned Brent would be traveling, we knew where we were headed. Keith is so happy visiting his grandmas and grandpas. He has been full of energy and happier than I've seen him in months. He truly hasn't been feeling this well since last fall. He's walking everywhere (with assistance) and his nausea is almost non-existent. To put it in perspective, he typically vomits 2-4 times a day at home. We've been in Yakima for a week and he's been sick 3 times total. On top of that, he's sleeping much better, needing less medication and tolerating his feeds at a faster rate. I'm almost nervous to take him home tomorrow! I know this round has been easier on him since he hasn't been dealing with urology and other external variables, but we can't deny the power of being in the homes of some rockstar Grandparents. 

Keith at the clinic before his transfusion. Fortunately, the red blood cells brought some color back to his sweet cheeks.

Keith and I during our first visit to the brand new Children's hospital last month.

Keith and Dad enjoying some sunshine last week.

Keith has sat at the table and tasted some food this week. I LOVED this view and couldn't resist snapping a pic.

Keith and Cole getting a "magic carpet ride" at G and G Burnett's house.

Brent came home early to relieve Debbie recently, (Keith and I were at the hospital) and I came home to homemade cupcakes and frosting faces. Cole and Ally were in heaven, eating cupcakes for dinner and hanging out with dad. Breaking the rules with Dad is way too much fun!

Ally and I had an outing to the salon this week. She was so excited to get her hair cut with mom. She was so good, mostly due to the Malty-poo running around the salon, but still. She was good. This is her before we chopped off a few inches. Although it looks much better (ie: less scraggly), I can't really say she looks that different. In order for that to happen, her mom would have to gain some hairstyle-skills and we all know that's never going to happen, so luckily she has a beautiful face that can compensate for untamed hair.



 Couldn't resist this pic, just like her Dad can't resist giving her anything she desires.



Basically, we all feel refreshed from being with grandparents and excited to enjoy another (almost) 2 weeks break from the clinic. Keith has only 1 more round of chemo left. Yes, you read that right.

One. More. Round.

It will be the same cycle he had in December, so we're bracing ourselves for a long April, but after that, it is a whole new ballgame. This last week has given us a small glimpse of what it will be like for him soon. It has been such a welcome view into the future for us. There have been times the last few months when I really doubted that things were ever going to be any different. This last week has completely changed my perspective and my attitude in a much needed way.

Just for laughs, I have a pic for all you moms out there who've ever had a day when you actually tried to look somewhat stylish and you're wearing more than the typical workout pants and a hoodie. I had one of those days recently and I ran several errands, feeling like I was a step above my usual game, until I got home, went into the bathroom to wash my hands, looked in the mirror and realized the Spiderman sticker on my atypically stylish shirt. I had put the kids in bed before I went out, so I knew it had been there at Costco, at the restaurant and at the grocery store.

This happens quite often but for some reason that night I couldn't help but laugh at myself and snap a picture. This is my life and most of the time, it's pretty awesome--made more awesome by Spiderman stickers in unlikely places.

L.O.V.E.

L

O

V

E

I've tried several times this month to adequately post about this time, last year. February 1 marked the one year anniversary of Keith's brain tumor diagnosis. I wanted to recap that day and the weeks leading up to it but I just haven't had the strength, energy or words. Maybe next year. For now, suffice it to say that we are very grateful it is the middle of February 2012 and not February 2011.
There is a time for reflection but sometimes we just have to embrace the moment.




***My sister, Sydney, put together a cute video to honor Keith. Find it on her blog, here.

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?!!!