May

In an effort to catch up on over a month worth of action around here, brace yourself. This is a long one.

May was a great month for Keith. He has been walking (with help) and tasting food more and more. At least, he's been tasting food as long as you count licking 129 Doritoes every day. The feeding clinic team told me to feed him anything he will eat. So naturally, ice-cream, chips and popsicles round out his diet nicely these days.
I met with the Early Intervention team and he is signed up for preschool in July. His hearing aid appointment has been moved a few times for various reasons, but he should finally be getting those in 2 weeks.
For some awesome pics taken by my sister of a quick trip the kids and I took to Yakima while Brent was traveling for work, click here and here. And for a great post and pics showcasing Keith, Cole and Ally's exclusive West Valley Firestation visit, click here. I'm letting my sister do most of the work for me because one, she's talented and two, I couldn't say it any better or any faster.
My sister Darel spent most of the month with us and helped me get the kids out while Keith was feeling so well. If the weather would warm up, we could go to the Zoo. But we did spend a few days at the Children's Museum. It felt like old times.

We spent a Family Night at the temple.

We went to Tannifer's wedding. Much more on that to come. That deserves it's own post...coming soon.

We've had some quality family time in the backyard and at home.

Cousin Caden joined us for some dress-up. Ally is the only girl I know who would insist on wearing a pirate eye patch WITH her Snow White gown. Gotta love her.

Ally and Aunt Darel photo-shoot.

Ally rockin' the wild mane.

Trip to the park.

Cole mauling Cousin Evie with his kisses.

Mother's Day picnic in the backyard.

Cole taking a ride on Grandpa Smart's scooter.  Not by himself. What kind of mother do you think I am? Aunt Darel took him.

Darel caught some stellar and accurate footage of some slices in the life of Cole. He is a character. I love him. Pay close attention in the first video. He takes a break at the end of his song and whispers, "Man...that was an awesome song." Yes, it is, Cole. And I envy your confidence.

This video is also typical. Cole in pajamas, fighting socks on his hands, Superhero rainboots on his feet, all while creating awesome Superhero names and powers for himself. (I don't normally let him outside in his jammies, but when Aunt Darel is in charge, anything goes...perks of being an aunt.)

I realize this is video overload, but seriously, can you blame me? This kid is hysterical. Again, donning pajamas, note the weaponry overload bursting out of Cole's pants in this next (and final) video. I wish I could say this was atypical, but alas, it is not. I finally got him to switch from wearing sweatpants to jeans based on the sole purpose of having pockets for his weaponry. I know. When you are a Mom, you use every angle possible. Sometimes I disgust myself.

Home Sweet Home

Keith finished out the rest of last week at the hospital and by Sunday, we finally got to say goodbye to overnight hospital stays.

On our way out the door. Wahoo! Keith doesn't look too excited but little sleep left him pretty grouchy.

Keith went home still needing anti-nausea meds every 3 hours and a 1 hour IV antibiotic every 8 hours. Fortunately, we've been able to cut way back on the anti-nausea meds since then and his antibiotic ends today which means I won't be setting an alarm at 3 and 4 AM every night to set up the IV infusion and to flush and remove it. It also means Keith and I will be getting more sleep since I inevitably wake him up every morning with the IV infusion. It means Keith can now take baths again once his port is deaccessed and he won't have an IV hanging off of him which means he'll be much happier playing without it bugging him all the time. We are really looking forward to saying goodbye to the IV antibiotics. Bet you can't tell...

For the most part, Keith has had a great week. He is starting to get a little more energy and the nausea seems to be improving right along with his energy.

Evidence that Keith ate 3 popsicles this week! Prior to those, he hadn't put anything in his mouth for awhile. Signs of changes to come!

I spent most of the week doing things I'd put off until treatment is over. Keith is now scheduled for hearing aids, regular Physical Therapy appointments, a Feeding clinic and an Early Intervention Evaluation for preschool. Whether he realizes it or not, he's still going to be a busy little man! But it will be much easier on him at least.

Currently, Keith is having an end of treatment MRI. (Hence, the reason I have time to post right now.) We expect good things. On Tuesday, we'll meet with his neurosurgeon and the oncology team following their Tumor Boards so we can have an idea of how things look and next steps for our little fighter. Keith will also have a kidney ultrasound and meet with the urologist.

As you can see, we are "done" with treatment but not quite "done". We never really will be and that is okay. The reason it feels okay to me is because I never want to forget what it's like to live at the hospital and what it feels like to be completely at the mercy of blood counts and at the mercy of specialist visits and MRI scans and unpredictable nausea and worse: at the mercy of the unknown. Not because I have a chip on my shoulder, but because every day new families are experiencing their February 1, 2011. They are hearing the words, "Your child has cancer." I want to remember what this whole experience has been like and will continue to be like so somehow our "education" as a family has not been in vain and we can use it to ease the burdens of others in similar situations. Like he has the last 15 months, Keith will be leading the way for our family.

"One of the greatest discoveries of parenthood is that we learn far more about what really matters from our children than we ever did from our parents. We come to recognize the truth in Isaiah's prophecy that "a little child shall lead them." (President Boyd K. Packer. April 2012 General Conference.)

Keith has been leading us all along. Times we felt we were the ones taking care of him, he has been teaching us to have more charity, more strength, more eternal vision. Cole and Ally have lead us in love and comic relief when we've needed it most. We are grateful for our brave little son, his loving and supportive siblings and the training we are undertaking as parents every day.

Spoke Too Soon

We got a brief reprieve from the hospital over the weekend but when we went in for a blood count check Monday morning, we weren't surprised that they kept us. Keith was feeling pretty crummy.
We are still here and it's not looking like we're going home any time soon. Poor Keith. He was really feeling well Thursday and Friday and then just started to tank over the weekend. After a few days of several antibiotics, he is finally perking up a bit today. It helps that he had lots of visitors to cheer him up.

First, Roxanne, the therapy dog. Keith got to pet her and feed her treats.

Then Julie brought up Caden and Hunter which was a highlight. Keith was very sad to see them go.

Then Grandma Smart came back into town and brought some stickers and a new flashlight to help entertain him. In hindsight, we shouldn't have let her leave on Saturday! Luckily for us, she accomodates our unpredictable schedule.

Later in the afternoon, Debbie brought up Cole and Ally so we could have a "changing of the guard" and Grandma could take them home for dinner and bedtime.
Keith wouldn't let Debbie leave, so she graciously spent her afternoon watching Scooby Doo and quoting movie lines with us.

Dad is here now hanging out. I fear for when all the fun people leave and Keith is stuck again with his boring Mom. Hopefully he sleeps so much he hardly notices... Right. I won't hold my breath for that.

For now, we are basically in a holding pattern as long as Keith continues to spike fevers. They found bacteria in his blood culture from Monday, but the antibiotics seem to be taking care of it.  With no immune system, it's impossible to pinpoint the cause, so we are hanging out again until his fever goes away and his immune system recovers.
At least today he's feeling better. It has been a nice break from the misery that held him for the last few days.

I feel like this post is similar to many other posts. We're waiting out another fever. But thankfully for Keith, this is our last one. I just keep telling myself, "This is almost over. This is almost over." In some ways it makes it much easier to stomach but it also makes me more impatient to get out of here!

For entertainment tonight, Brent and I resigned ourselves to heart rate competitions with the pulse oximeter. I'm proud to say I beat him but not by as much as I thought. According to Google, Brent's heart rate falls in the category of a man who is in "excellent physical shape"--surprising for a man who exists mostly on Coca Cola and whose lifestyle should exhibit signs of stress.



I'll leave you with a typical picture of Cole from over the weekend. Grandma treated him with a trip to the Dollar Store and he picked out an FBI kit. He is the ultimate crime fighter. Who wouldn't want Cole protecting your city?

Further Proof

These videos from this afternoon are further proof that Keith is feeling better.

Upon closer examination, these videos also illustrate the following:
Proof that Cole speaks in one volume setting: LOUD.
Proof that Ally has no respect for personal boundaries.
Proof that Keith wears out pants quickly.
Proof that girls can misfire on the toilet too. (This is evidenced in Ally wearing Keith's pajama bottoms)
Proof that Cole and Keith are knee-deep in the opposites phase as they attempt to describe the rules of the road.
Proof that we completely disrupted quiet time in the hospital hallways today. If they won't let Keith out of here soon, we'll make so much noise that they'll be begging for us to leave.

What sick kid?

Keith played his heart out this afternoon, earning the nap he's taking right now. Grandma Smart brought Cole and Ally down and they took the playroom and hallways by storm.

Even though Keith's fever has broken, the oncologist is still reluctant to send him home since his blood counts are showing no sign of recovery. (And they won't for at least another week.) But at least he's feeling better. I can guarantee it's less germy at home than having Keith scoot up and down the hospital hallways. If he gets a fever we'll be back, but we are pushing to get him home for now. We're crossing our fingers that there's no hint of fever tonight so we can hopefully head home tomorrow!

Hulk Smash!

Keith officially kissed chemo goodbye today as the final push went in at 11:23 A.M.  It feels strange to think that soon we won't be living at the oncology clinic and riding the wave of ever-changing blood counts. It has literally consumed our lives for almost 15 months now. We've never been so relieved and so grateful to put a chapter of our lives behind us.

Unfortunately, we haven't put hospital admits behind us just yet. Keith received both red blood cell and platelet transfusions today and had a rough go. He vomited consistently throughout the day and developed a 103 temperature. Considering his extreme neutropenia right now (he literally has zero ANC), the fever earned him a one way ticket from Day Treatment to "The Floor".  So, here we sit and wait out his fever or wait for his immune system to recover. When one of those two things happen, we get to go home.

If Keith has anything to do with it, I expect he will take matters into his own hands and "Hulk Smash" his way home soon--and hopefully avoid a night here again for a very, very long time.

Congratulations to our bravest Superhero! You did it!!!

Technically, we won't really be celebrating until we get Keith home, his counts are recovered and he's feeling better. But we can't help but feel the excitement of Keith taking his final dose of chemo. At the beginning, we really did wonder if Keith would ever make it to this point. What a blessing to be standing at this end of his brain tumor diagnosis. We hope life for Keith only gets better from here. That is something worth celebrating!