"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.

Perspective

Our 30 hours has turned into 50 hours and counting. We really are supposed to be out of the hospital soon but it seems to take forever to get out of here! They couldn't release Keith last night because he kept getting fevers so we were all pretty bummed to not get him home. Brent stayed with him last night and Keith slept from 9 until 7 this morning. He doesn't sleep like that at home! So maybe he just had to sleep the fever out of his system. At any rate, he is supposed to go home sometime soon.
Last night when I was leaving the hospital with Cole, I was feeling pretty frustrated because Cole was crying to stay at the hospital and Keith had been crying to go home. Ally has been struggling the last 2 days. I'm not sure if it's teething or being away from Brent and me. But our whole family is completely out of sorts during these hospital stays. I started to feel sorry for myself for a little bit but then I realized a few things.

One. I'm not a single mother. I've befriended at least 3 mothers here who do not have a husband. Two never started the cancer journey with a husband and one had her marriage fall apart during it. All of these mothers have other children besides the one receiving treatment. One has 5 other children! Some of them rent apartments for months at a time to be close to treatment.  Some leave other children with out-of-town relatives or friends. Some bring very unhappy toddlers with them to treatment. (I couldn't imagine bringing Ally down here for longer than 1 hour. She tears this place a part!) So, at least I have a supportive husband who wants to sleep with Keith in the hospital and is then willing to go to work for the day. We also have incredible family and friends in town or who come into town to take great care over Cole and Ally.

Two. This is just temporary. I know that sometime today we will go home. As annoying as it is to spend an extra day or night here, I know eventually our family will be together at home for the next 5 weeks. A few days every 6 weeks is not that big of a deal. How can I complain about Keith receiving such great medical care so close to home?

Three. We have a safe place to be. We aren't being ravaged by war or ransacked by some natural disaster. Really. I need to just keep my experiences in perspective here. We are all safe. Keith is getting great care. He is going to be all right.

Being back in the hospital these last few days has reminded me that Keith is sick. Of course there are reminders at home when I'm running his feeding tube pump, counting calories and administering medication. And there are occasional reminders in public when we're headed into the Children's Museum and Keith gets sick all over his clothes and I'm purchasing an overly priced t-shirt at the Zoo across the parking lot so he can go play without too much delay.
But for the most part, I really was starting to feel so normal for a few weeks. Being back in treatment has jarred me into the reality that so many families are facing right now. We've reaquainted ourselves with families we met months ago and caught each other up on our child's progress. We have our own little community here. It's the most depressing community I've had the privilege of being a part, but it does have a sense of belonging and understanding that nobody can really offer unless you've lived this treatment life of uncertainty and unpredictability.
In a weird way, I'm grateful to have experienced it so I can hopefully know how to help someone in the future going through something similar. I desperately wish there was another way. I wish that Keith wasn't the one suffering so I could learn all these things. More than anything I wish that right now.
But if anyone can do it, he can. He's doing it. All these frail little children aren't so fragile on the inside. I wish I had pictures of all the kids we've met so you could see their sweet faces and bald heads but you'll just have to settle for a picture of my little guy.

The nurse just came in. We're headed home. I can't wait to wake Keith up and tell him the good news!

Been there, done that

The first 2 weeks post-radiation were rough. I think mostly because our expectations were unrealistic. Or, at least mine were unrealistic. Since Keith was finished with radiation I thought he would feel better and instead he seemed to be worse. He was sicker and sleeping a lot less. He really struggled to get comfortable at night and it was difficult to determine how to help him.  Adding to my frustration was the fact that the Boston Marathon came and went without me. Brent was really supportive and encouraged me to go, but I couldn't do it. I couldn't focus enough on training during the last few months and I really didn't feel right leaving Keith the last week of radiation to go run in a race. Even if it was the Boston Marathon. 
A little salt was rubbed into my wound when I discovered that for the first time in 30 years they've decided to tighten up the qualifying standards for Boston. But I still plan on getting there. Someday. And when that happens, it will be done the right way. Keith will be waiting at the finish line instead of being hooked up to an IV. And I will focus on seeing his sweet face at the finish line instead of wondering how he's doing back home.
Keith should be wrapping up treatment next April, so it won't be next year but maybe 2013. I've read that most people start slowing down at age 38. So, I figure I can only get faster in the next 6+ years. Right?
If only it were so easy.
I should add that I couldn't get a return on my entrance fee, so if you see me wearing my Boston Marathon t-shirt under all my clothes, it's only because it is now the most expensive article of clothing that I own.

Anyway, at just over 2 weeks post-radiation, Keith turned a corner. He was hardly sick at all. He was able to sleep better and he had lots more energy to play. Somewhere in the middle of turning that corner, we took a family trip to Great Wolf Lodge which turned out to be a perfect place for us to escape for a few days.

Brent was able to teach his sons how to wield weapons of unusual size.

Cole's wildest dreams came true: he became a werewolf.

And had werewolf cubs as siblings.

We played in the water until our skin was shriveled and wrinkly.

The kids used their magic wands to open treasure chests, light torches, wake up animals, and fight dragons.

Our room was close to the activities so it made it easy if Keith was too sick or too tired to play. By the end, we were all too tired to play and we spent some time in our "cabin" just hanging out and watching movies. Considering how Keith was feeling at the time, our trip greatly exceeded our expectations. He had fun and we got some quality time together.