Independence Day

Keith is currently back in the hospital for the beginning of his second chemo cycle. We're hoping he's discharged tonight. While Keith's asleep and awaiting his independence from his IV pole, I'll sum up the last week.

We had a festive 4th of July party with family, thanks to Brent who is turning out to be a pretty incredible party host. Shocker. I know. Brent and party in the same sentence? They say people change for the ones they love so I guess that means he loves me lots...
He brewed some homemade rootbeer, grilled some serious steak, set up an outdoor theatre, lit the tiki-torches and worked with his brothers to create an impressive fireworks display. Somewhere in the holiday weekend he squeezed in Cars 2 with the kids, golf, and dirt biking.

Ally spent more than an hour hanging out in the drink bucket before the party. Going to the "big movie" (Cars 2) is probably the only thing that could get her out of that cramped bowl.

 Keith loved being outside playing with Grandma B, Cole, Ally and Caden.

 Cole loved playing with fire.

 Ally, Caden and Keith watching the outdoor movie (below). Cole was probably changing his pajamas for the 5th time of the evening so he's nowhere to be found in this pic.

 Brent and Keith watching the show.

 Ally, cheesing it up (above) and loving those kisses from Jenny (below).

 Keith hanging out with some of his favorite ladies.

On the morning of the 5th, since Keith didn't have to go into the clinic, Grandma Burnett drove us all up to Yakima for the week. We played with Milo, jumped on the trampoline and spent time swimming in the pool.
Luckily for the kids, Grandma Smart taught swim lessons for years so they all got private lessons from a pro.

 Keith loved being in the water and spent an hour or two in the pool every day. We really wore him out!

 We witnessed some pretty serious squirt gun wars. Grandpa Smart and Keith vs. Grandma Smart and Cole. It was intense.

Ally hanging out with Grandma.

 Keith hanging out with Uncle Shea who is finally home from his mission in Raleigh, NC! Yay! We were so excited to celebrate his homecoming. He is back and even better-looking than we remembered!

 Ally couldn't get enough of her BCF (Best Cousin Forever), Evie. She had to help feed her and change her and love her. Yay for a girl cousin!

Keith had a great week off from treatment. He has been so upbeat and talkative and just plain happy. He's also been open to tasting more foods. It has been so fun to watch. He absolutely LOVES hanging out at both grandparent's homes. Those are his two favorite places to spend time. He still isn't walking. His foot drop continues to be a problem. So much, in fact that the oncologist didn't give him the chemo drug that causes foot drop this hospital visit. She's going to wait until he can stand on his own and walk with assistance before giving him that particular chemo again. Supposedly, in rare cases foot drop can be permanent so they obviously don't want to overdo it. They've assured us that a break from this drug won't be enough to allow the cancer cells to rally.
We received the results from Keith's sedated hearing test and his hearing his okay. He's experienced a mild loss of hearing but they are pushing forward with treatment until they see something more alarming. So, I guess that's good.

I know this is the longest post ever so I'll wrap it up with some pictures from today. Grandma Burnett brought Cole and Ally down for a visit this morning. Everyone played hard in every playroom available to us and of course, there were tears at the end; Cole crying to stay and Keith crying to go home. But I just spoke with the oncologist and we are set to leave as soon as Keith's hydration finishes tonight.
This visit seemed smoother than the last. It started out rough when we headed down the hallway towards the clinic yesterday morning. Keith immediately started vomiting from the anxiety of going through that door and I thought, Great. Here goes another long hospital visit. But he's done really well. He hasn't slept very much, but he's only thrown up once and he's been pretty active. Yay for good days and good stays. Here's to hoping for little to no vomiting over the next 2 weeks!

Chuckles

Keith was able to receive a break from the clinic as we had hoped so we spent a week in Yakima. (More on that later.) After spending so much time in the sun, I might have had a few or several thousand more freckles break out on my face. Cole looked at me and said, "Mom. You're face is soooo dirty. You need to wash it."

Gotta love the honesty and sincerity of a 3 year old.

The next day Cole broke out in hives from sunscreen (I think) and he said, "No, Mom. Those aren't hives. They're chuckles."
Me: "Chuckles? What are chuckles?"
Cole: "I have chuckles on me just like you have on your face, Mom."
Me (laughing hysterically): "Oh, you mean freckles? Ha! Yes, well, maybe someday you'll have chuckles just like me."

If you haven't laughed yet, then maybe this picture of Cole can brighten your Tuesday. I followed him in from the pool last week and found him stark naked, except for his goggles and he had found my trumpet from Junior High marching band days.
If he has chuckles and can play a mean trumpet, am I justified in fearing for his future social life?

Life Goes On

And on and on, apparently. Brent and I celebrated our 10th wedding anniversary last month. Time really does fly. And it makes me feel old. Really old. It also made me realize one major thing. Brent and I do not have enough pictures together. So, my goal for the next 10 years is to make sure we get more pictures of us. Even if I have to train one of the kids, we are going to find a way to capture moments when we are together.

In January, Brent and I had big plans for our anniversary that are obviously going unfulfilled, but 11 years is going to be celebrated in style. Somewhere sunny, exotic, romantic and relaxing. I will just continue dreaming until that happens.
We did get to go to a really nice dinner downtown. It was a beautiful summer night and we had a great time. I don't know what we expected when we got married, but life has a funny way of surprising us. Mostly, I can't believe how incredible our life is together. We hit the jackpot with our kids and we still genuinely love spending time together. Just us. It doesn't happen often, but maybe that's why we crave it so much!

Our day was tainted by the reality that one of our friends at the hospital is likely not going to make it. He is a 5 year old little boy that we've known for a few months. His first week of radiation was Keith's last week. But he's been battling for over a year already. I ran into his mother on our way out of the clinic and she told me the news. They are willing to keep treating him but his MRI scans aren't showing improvement. I cried. I cried hard. I usually don't break like that, especially in front of Keith and Cole, but they were standing there with me when my friend shared the news and it just caught me off guard. It was already an emotional day as I contemplated how I had anticipated spending our 10th wedding anniversary and I can tell you it wasn't inside a children's oncology clinic. Cole kept asking me why I was crying and then as he wiped one of my tears, he said, "Here, Mom. I'll wipe your tears for ya."  So sweet.
Anyway, it just hit me hard. That's why I look so tired in these pictures and why I usually don't post pictures of myself. I look tired. I am tired. My heart aches for these people going through so much. And the day to day can sometimes be draining. I don't mean to be depressing. Life really is mostly "normal" for us these days but news like this just really hits home.

As we celebrate our 10 years together, we have many happy memories for which we are so grateful and we know we'll have many, many more. There's just a shadow there that has changed us forever. It hasn't all been bad change.  A lot of good change, actually, but still some very real heartache that we never anticipated 10 years ago. But that's okay. We have each other and not everyone has such a strong "other" so we know we are blessed.

Blast from the Past.

June 21, 2001

Portland, Oregon LDS Temple

"Many Hands Make Light Work"

My parents always used to repeat this proverb when we worked together to clean up the house or do a project as a family. As I clipped 60 fingernails and toenails (none of which were my own) this week, I decided that the proverb should say, "Many Hands Make MORE Work". At least until those hands reach an age of accountability. I'm beginning to wonder if it ever does get easier. I suppose it doesn't really matter as long as those hands are as cute as these.

And these.

Cole came along for Keith's clinic appointment again last week. It didn't take him long to request that his blood pressure be taken and that he get his own pair of "doctor gloves." It shouldn't surprise anyone that when Keith needed a 4 hour red blood cell transfusion, the nurse practitioner suggested that Keith and I come in the following day. Sans Cole. 

Cole. Gotta love that kid and his imagination. But I have to admit that I didn't hesitate to take her up on her offer. So, last Wednesday, Keith and I had a day all to ourselves. We watched movies, read stories and took a nap while he received new blood and thankfully, new energy.

Keith's energy has shot up but his mobility remains stagnant. He will only walk with a LOT of pushing from Brent and me and he doesn't like it. We continue to try and get him to be as active as possible even if he's not walking but that has been the greatest challenge of the week. He has enjoyed tub-time, swinging outside and throwing a few punches with Brent's boxing gloves. We've encouraged him to come to us when we are playing a game he wants to play rather than taking everything to him. Other than that, I'm out of ideas on how to get him moving. Depending on how his blood counts look today, we may be able to take him to the Children's Museum this week. And soon we're going to attempt to get him swimming in G-ma Smart's pool. That's our next strategy. I'm open to suggestions if anyone has any brilliant ideas!!!

Right now, I'm waiting out a 3 hour hearing test while Keith is under anesthesia. He has hearing tests every 6 weeks throughout chemo to make sure the damage to his hearing is as small as possible. They didn't get as detailed information as they wanted a few weeks ago, so they're going the sedated route today. After that, we'll get to go to the clinic and see how blood counts are looking and with any luck, we'll have next week off before he is admitted for a new round of chemo in 2 weeks. I would LOVE to get him a break from the clinic next week. His weight was down this morning from unexplained vomiting a couple times last night. We also couldn't run his feed since he had to be fasting for anesthesia. But hopefully, we can gain some ground over the next two weeks.

Keith was in pretty good spirits this morning considering he slept very little and considering I woke him from his bed to go to the doctor. The first thing he mumbled, "Mom, are we going to the doctor?"

"Yes, Keith. I'm sorry but we are going to the doctor."

He didn't whine or cry. He pretty much knows where he's going anytime he is awakened from sleep. He is such a little trooper. All morning while we waited he kept telling me about how he was going to protect Dumbo from the mean boys or how he was going to turn into a nice dragon to save Mulan or how he was going to make Snow White a yummy apple so she doesn't get sick. He is quite the story-teller (and always the hero). And I know everyone thinks this about their child, but seriously, Keith is THE sweetest kid. I think I'll keep him and his hands, even if it means more work.

True Colors

Fatherhood has brought out the very best in Brent. I've never known him to be so dedicated and attentive to anything more than our children. He puts Keith, Cole and Ally's needs above his own every time. Whatever expectations I had of him as a father before we had children, have been far, far exceeded.
And while I may not understand why Keith has to suffer so much, I do understand why he was sent to be Brent's son.

Highlights

Keith has survived the first 2 weeks following his chemotherapy boost. He spent the first 10 days pretty sick--mostly vomiting and diarrhea. The vomiting has slowed now to about once every 24 hours and he even had a 3 day streak without any throwing-up. I know. The things we get excited about these days...
At this point we think the vomiting is related to the weekly chemo he's receiving which slows his ability to digest the formula running through his feeding tube. That chemo supposedly causes constipation. I wish that side-effect would kick in about now to help counteract the diarrhea! Honestly, I think Brent and I drive ourselves crazy trying to dissect every little possible cause for this symptom or that. There are so many factors at play. Every time we think we have something "figured out" our theory is blown. Good thing Keith is such a trooper. One minute he's puking and the next minute he's pretending to steal your nose. We have noticed a marked increase in his desire to converse. His voice seems to be coming back stronger and he is definitely more chatty since post-surgeries. He continues to be really playful even if he prefers to sit down instead of chase lately.

I think our biggest concern is the loss of sensation Keith is experiencing in his feet. He was getting around so well before his boost and just recently he's exhibiting a mild form of "foot drop" because the nerves in his feet aren't able to help him keep his balance very well. He walks with his feet far apart and with high knees. He prefers a hand to hold or something to lean on because of his loss of balance. We may have to lower the dosage on that drug now that we're seeing such a strong side-effect. We'll see next time we go in, I guess.

This week's clinic visit was made more interesting by Cole's presence. He begged and begged to go to the doctor with Keith. He overheard me selling Keith on how great the doctor's office would be with all the toys and the movies and of course Cole couldn't miss out on the party. I almost regretted my decision when Keith needed a platelet transfusion and our visit lasted almost 5 hours but overall, he did well and I think he'll be coming along for most future visits. I know he's curious about where Keith goes all the time and he's usually pretty good. Cole turns on the charm for the nurses so they love when he comes along. Plus, they offer him an unlimited supply of Scooby Snacks and TillaMoos. If you're not sick, the clinic might as well be an amusement park. At least if you're name is Cole.

Cole found some glasses in the toy bin at the clinic.

Cole making himself at home in the clinic playroom.

Keith found some glasses to his liking as well.

Hanging out in the waiting area. The boys brought along their backpacks full of their favorite toys.

The best part of our clinic visit was hearing...drum roll please....Keith gained 1.5 pounds! That is HUGE for him. He broke the 24 pound barrier. Who knew that the vomiting and diarrhea wouldn't hold him back at all? He's certainly earned the titles Super Keith and Keith the Mighty.


Highlights lately:

Sunday Brunch

It is rare when we can get Keith to the table for meals, so when he wanted to join Cole and Ally for animal pancakes, I had to break out the camera. He even tasted some powdered sugar and licked some bacon.

Big Boy Tools

In his "wisdom", Brent hand-selected some special tools and a toolbox for Keith and Cole to help him with projects around the house. I prefer the tools to remain in the garage unless Dad is around to supervise. Call me crazy, but I don't love the idea of two 3 year-olds wielding wire-cutters and hammers.

Mad Bag

Brent has had a punching bag in the garage for a long time. He's currently training Cole to aim his aggression and passion for fighting toward the "Mad Bag" and not toward his little sister. Here's Cole practicing his jab and cross-over.

Tub Time

Even though it's getting to be a tight squeeze, I love when Keith is up for a tub party. It can be a little wild with Cole donning "water wings" so he can go for a "swim" and Ally chugging bubble water so she can spit it back out. It is a sight to behold. You can probably imagine why Keith has to be in pretty high spirits to withstand the merriment.

Eckhardt Family Charity Run

 Brent's youngest brother married into the most amazing family. A family who happens to be in our ward and who happens to be our very close friends. Last weekend, they participated in the Utah Valley Marathon/5K in honor of Keith. Race revenue goes to children with cancer for Christmas. I wish you could see their shirts up close. They have a huge picture of Keith and under the picture it says, "Super Keith! We love you!" Keith has many supporters and we feel blessed to have such wonderful friends and family showing their support in so many ways. We appreciate the blisters earned and muscles pulled on his behalf!

Debbie, Jenny, Katie and Lindsay have spent many, many hours at our house helping out with the kids. Cole, Keith and Ally think they are part of our usual routine now, which is great. The girls' backs are getting pretty sore with all the "rides" they are providing. Thank you, all. Someday I will be paying Jenny in currency other than quesadillas, cookies and Keens. For now, we are so grateful for the service of their family and so many other families and individuals who continue to drop things on our doorstep, pray for us and so many other thoughtful things.