Loose Ends

Inquiring minds are desperate to know what BINGO prize I won. Well, Keith won, actually. I might have had a little too much fun competing against ill children, but since it was all in the name of my own sick child, my conscience is clear. From my observation, it was mostly parents or nurses playing for the kids who were too sick or too tired to play. I think most "kids" win something by the end of the afternoon. When it was my turn to raid the toy tower, I picked out a Tigger game. Keith, Cole and Ally seem to like it pretty well. At least, I've picked up the pieces to it 20 times daily, so I guess that means it's well-used.
I'm hoping next time Keith will be awake so he can play with me. Otherwise, I will just be another pathetic site at 3:00 on a Wednesday afternoon.
Keith has adjusted to his casts. He stopped asking to take off his "boots" after about 2 days. I assume every Friday we will go through a similar adjustment period as he gets used to the stretch. He is slowly beginning to realize that he can stand in his casts without pain.
His nausea is a lot better this cycle. He's still vomiting occasionally but we aren't having to medicate him every 2 hours like the A cycles. I'm attributing several of the upset stomachs to the appetite stimulant his oncologist started him on this week. We were hoping that would get him eating some real food but so far, the only tangible results have been changing the color of his vomit.
We also had to return to the hospital less than 24 hours after Keith was released because he vomited up his feeding tube again. But we didn't have to go to the E.R., they let us go directly to the nurses on the oncology floor, so that was really nice (and fast). Keith and Cole got to pick out prizes, which only solidified Cole's belief that the "doctor" is nothing but fun and games.
The best news of all is that Keith is actually sleeping through the night. He slept for 12 hours straight the last two nights! I don't think he's done that since he was diagnosed. Keith has been capitalizing on his extra energy and more settled stomach by asking to go to all his favorite places. In his first 4 days of freedom from the hospital, we've been to the library, a church BBQ, church, the Children's Museum and the Zoo. He is happy and playful and energetic--things we weren't expecting to see so quickly after treatment but we are grateful and we are riding this wave while it lasts.

Purple boots

Hospital sleep-deprivation has finally caught up with Keith. He had a bad bloody nose that persisted through the night. The drainage combined with chemo caused some horrendous vomiting this morning. It was black. That's all I'm going to say.
At 11, Keith had his audiogram to check how the chemo is affecting his hearing. He doesn't like doing those, for whatever reason, and it got ugly real fast. He's never been a tantrum-thrower but he threw one in the booth today. We finally called it quits after 40 minutes and the audiologist decided we better go the sedated route again in a few weeks. We had about 15 minutes between the audiogram and his leg castings which was plenty of time for him to fall into a deep sleep by the time the Physical Therapist came to get us. Clearly, he would have rather slept than have been pinned to the chair while his lower extremities were fitted for straight jackets. More tantrums ensued as he begged for a bed and for the lights to turn off.  I don't blame him one bit. I didn't apologize for his behavior, either. He has suffered and continues to suffer and every time he tries to get some sleep around here, he's interrupted. It's not anyone's fault, it's just the way it is.  I thanked the providers for their patience but I never once apologized for his behavior. I think he's entitled to a little rage now and then, especially because he never shows that, unless he's a walking zombie, as evidenced today.
Keith's finally sleeping right now while he receives an IV antibiotic. Hopefully we'll get his discharge orders soon so we can go. I already have the car packed and ready to roll. I hope when he wakes up, his feelings towards his "purple boots" have warmed up. Aunt Chels and I are working on stickers and special markers so we can help decorate them. Hopefully, he can find some fun in decorating a new set of casts each week. And I really hope that next week, they have more colors to choose from besides pink or purple.

Round 3

We're back on the children's oncology floor for Cycle 3 of chemotherapy. Keith is receiving a different chemo drug this time which means his stay is one day longer but the side-effects are supposed to be gentler. We hope. So, far he's only been sick once and they aren't using any heavy-duty anti-nausea drugs, so that's good. Cole and Ally have been up to visit the last two days which always brightens Keith's stay. Brent continues to take the night-shift which means he gets zero sleep but it makes Keith happy. He is a true Daddy's boy.
Right now, Keith is asleep and I'm playing the weekly highlight of the oncology floor, BINGO, for him in hopes that I can win some sweet prizes. Hopefully I can blog and BINGO it up at the same time. I'm holding out for O-Stretcher or G-Wheelchair and we have a BINGO.
Yesterday, Keith got to spend some time with one of the therapy dogs on the floor. It made his day.

Keith just wrapped up his last dose of chemo. So, now he needs 24 hours of hydration and we'll get to come home tomorrow night. Aunt Chelsea is holding the fort down with Cole and Ally. She's doing an amazing job. Everyday she has brought them to the hospital looking more put together than I ever do.
***

We spent last week in Yakima soaking up the sunshine and spending time with family. Keith continues to be happy and playful despite limited mobility. We had one hiccup in our trip when Keith vomited up his feeding tube but thanks to a kind friend of the family who happens to be an ENT, we got it replaced quickly.
Keith really is doing great. He even surprised us recently when he climbed up the full flight of stairs in our house. He had a P.T. evaluation before our vacation and they confirmed that he definitely needs serial casts to stretch out his heel cord. The first casting should be done tomorrow (in addition to another audiogram). They basically put hard casts on his feet and up to just below his knee and he'll go in each week to stretch out his heel cord and re-cast it in the new position. It's supposed to take around 6 weeks to reach the ideal stretched point. The P.T. said she was surprised at how severe his tightness was, but since he hasn't been tight for too long, she's hoping to see quick results. Time will tell.

Highlights from the Palm Springs of Washington:

Trip to the Tree Family home where we could see their animals and cruise around.

Keith LOVED "driving".

Playing in G & G Smart's playhouse.

Hanging out by the pool. Jenny and Katie came along so they could see what Yakima is really like...Pretty sure they were impressed.

We had a few brutal pool basketball games. Everyone earned their bruises and scratches.

Riding on Aunt Darel's "tail".

Keith and Cole loved playing games with the "big" people.

We attempted to get all the Burnett cousins together for a picture. It turned out better than I thought.

The kids LOVED having scooter rides at G & G Burnett's house.

Brent even took me for a little spin.

Don't the eye shields look amazing?

Overall, a fun and relaxing trip. Brent stayed home from the 9th annual Burnett Fly Fishing Trip to spend time with Keith and the rest of us. For anyone who knows him, that is a HUGE sacrifice. But it's what he wanted to do. It was nice to have so much time to relax as a family with lots of helping hands for the kids.
For now, we are back in reality which is good, too. Not nearly as relaxing, but still good. We've received lots of support from so many. I couldn't begin to name all the kindness we've been shown. It's amazing how people are thinking of us and pay attention to when Keith will be in the hospital. I've learned to be more aware of others as I've noticed people watching out for us.

Party Girl

Ally turned 2 yesterday. How is our baby 2?!!! The day started out rough when I left her screaming at home while I took Keith (and Cole) to the doctor. I had Jenny and Katie help her open a present early to help ease her pain. I heard it worked.
Keith is doing great, by the way. His blood counts are higher than they've been in several months! He needed an IV antibiotic since he had a fever but it's come down, so they gave him 2 weeks off until he's admitted for chemo again. Yay! Keith was also very excited about having Cole with him. He had almost no anxiety over the visit which is rare. Looks like Cole will keep on coming to appointments as much as possible. Yikes...
Anyway, by the time we got home, Ally was asleep so I didn't really see her until the afternoon but we partied hard to make up for it. There is no shortage of love in this girl's life. With that face, though, how could it be any other way?

 Keith and especially Cole were extremely "helpful" in opening presents. I'm honestly not sure if Ally opened one present but she really didn't care. She was just enjoying the chaos with her brothers.

Keith, Cole and Ally decorated foam cupcakes with their names. That's about as crafty as I get. Open up a pre-set package and put on the stickers. I might have given myself a pat on the back for it, too.

The timing of Ally's arrival in our lives has turned out to be such a blessing. We don't know what we would do without a playmate for Cole when Keith is in the hospital or gone for appointments and really just unable to run and play as usual for the time being. Cole has never known solitude and it just is right that Ally came so close on the heels of the boys. We never would have planned it that way. Never. But isn't it crazy and often amazing how some things work out better than if we'd planned it ourselves? Good thing someone else is in charge, right?
Ally is playful, coordinated, independent, cautious and opinionated. She is extremely perceptive of the needs of others. If we're going outside, she gets EVERYONE's shoes and brings them to each person. She knows which shoes belong to whom. If you are speaking to someone and you mention that you need something, she will go get it for you. If Keith is scooting across the room, she gets on her little bum and scoots, too. If Cole is climbing or yelling or singing or coloring. So is she. She LOVES her brothers. She lives for when they are awake and ready to play with her. Our lives just wouldn't be the same without her.
With the exception of having some separation anxiety, she has ridden the waves of change the last 6 months incredibly well. How grateful we are for that.
Here's to a happy 2 year old!

Honest

I've started to post a couple of times in the last 3 weeks but I have run out of steam or I have been interrupted or I've just procrastinated. I really want our blog to be honest. I don't want to sugar-coat things, but I also don't want to sound like a big, fat baby.
Spoken like a true man, Brent told me to stop stressing about this post. "It doesn't have to be witty, or funny or heart-warming. People just want to know what's going on with Keith."
Of course he's right, but I couldn't resist retorting that if it was so easy, he can take over the management of our blog. I think that curbed his commentary. Although, I would like to see him post again sometime soon...

Anyway, here goes.
I feel like a lot has happened in the last 3 weeks. I'll start with the positives.
First, Keith has gained weight! He has broken and remained above the 25 pound mark.
Second, Keith's hair is growing back! It seems to get longer almost every day.
Third, Keith hasn't thrown up as much with this chemo cycle. Brent and I followed the lead of our nurses in the hospital and gave him 2 types of anti-nausea medications, alternated every 2 hours, around the clock for the first 2 weeks after treatment. He's still getting sick once or twice every 24 hours mostly due to either anxiety or his hacking cough from a cold that he cannot kick. But it is getting better. I would like to add that my vomit-catching skills are also improving, as evidenced by our visit to the orthotist this week.
Fourth, Keith didn't need a platelet transfusion this cycle, only a red blood cell transfusion. And since his transfusion, he is a new man. We've made the most of more energy and higher blood counts by visiting the Zoo and the Children's Museum and having a play date with friends this week. It has felt SO great to feel normal and do normal things.

Cole, Ally and Keith checking out a grasshopper they caught.

Aunt Chelsea and Keith showing off painted faces at the Children's Museum.

More fun at the Museum.

Cole and Keith ALWAYS bring me flowers, real or fake, dandelion or dahlia. Dad has trained them well.

There have been some challenges these last few weeks, too. The first full week after Keith's chemo treatment, we were in the clinic 3 times where his port was accessed 3 times and his feeding tube was replaced twice. All of these mean some serious pinning down and screaming occur which I know I've mentioned before but sometimes it just gets wearing. When you add the fact that Brent and I were literally getting up every 2 hours around the clock for those few weeks, it's not a recipe for sanity. One of those clinic visits, I carried Keith in naked. You read it right. I planned for Keith and I to meet Brent for lunch on our way to his appointment and it turned out very wrong. Keith got sick big time all over himself and all over Brent. He had to go in because he was due for chemo that day and the timing of it isn't very flexible so I carried him in with no clothes on. Seriously. To ease my anxiety about it, I did what any normal, sleep-deprived, stressed-out woman would do: I opened up a huge bag of M&M's and went to town on the drive from Brent's office to the hospital. Luckily there are some very generous people who donate pajamas to the clinic and Keith accepted his third pair in 6 months. Of course, he's only 3 years old and it's not that big of a deal. It just felt so humbling and I got lots of looks, despite my efforts to wrap him in a blanket. It helped that after Brent went home to change, he took the rest of the day off so he could be with us in clinic. This meant working late into the night, but I was so glad he came.
Nothing extremely out of the ordinary happened in that first week, but I think that was the problem. The "ordinary" is still difficult almost every day and it won't be changing anytime soon. I think that just really hit me. 
During Keith's clinic visit last week, we saw a different oncologist than we usually see and he was extremely concerned about Keith's lack of mobility and tightness of his muscles. He lowered what felt like a bomb when he told me from what he can tell, Keith needs very intensive Physical and Occupational Therapy for months and will have ongoing therapy for years because of the tightness of his heel cord and lack of strength and mobility in his leg muscles. And I shouldn't expect him to be walking for a very long time. I guess I knew it would take some time but this oncologist just seemed really concerned about it where the other providers hadn't. (Keith had just been seen by a P.T. the week before!) Then there was a discussion over whether his lack of muscle movement was due to the chemo or if there were some brain issues going on and it really stressed me out. Then, of course I felt guilty because I'd let it go for so long and should have done more. Anyway, long story short, he's being fitted for splints and probably serial casts to help stretch out his achilles tendon. In the meantime, we're doing stretching, massaging and attempting to get him standing as much as possible at home. He is also continuing to receive his outpatient chemo, just at a slightly lower dose. The oncologist was uncomfortable missing more than one dose. Again, nothing too out of the ordinary, he has already been in P.T. and O.T., but nobody had spelled out the long term effects for us like that and I guess at least I can appreciate the doctor's honesty.

And for the lowest point, one of our little friends from the clinic that I blogged about in June, passed away on July 22. He passed one year and one day after his diagnosis. Our hearts are broken for his family. I can't even think about them without feeling like my airway is tightening and I can't breathe. His mom and I have formed a friendship. We talked this week and we're going to lunch in a few weeks. I don't even know what to do for her. I can't really express all my emotions about how I've felt about it, but on top of everything else, it has been a low point for us since Keith's diagnosis 6 months ago.

We are humbled that Keith's prognosis is good at this point. He has another MRI slated for September and we hope to have further confirmation that treatment is working. The next year will be challenging and hopefully each year after that gets a little easier. But who knows. There are many unknowns about the future that I can't allow myself to mourn over because it's not constructive for my mental health. There aren't enough M&M's in the world to medicate me when I allow myself to follow that train of thought. Brent and I promised each other months ago that we wouldn't mourn the unknown. I'm trying really hard to keep my end of the deal.

In the meantime, Keith is over the hump of acute-effects from cycle 2 of chemotherapy and back to his playful self. He amazes us at how he never complains about not participating in running, climbing, chasing and rough-housing like Cole, Ally and other kids his age. He happily scoots around the house where he needs to go. Never once has he asked why he can't do things anymore or shown resentment for his physical limitations. The only explanation he has for why he can't do things is that, "My feet are broken."
Break my heart into a million pieces. This kid is too sweet. We could all do better to be more like him.



 We've had lots of help in the form of grandparents and aunts and uncles lately. We don't know how, but someday we will find a way to let them all know how much we appreciate all they've done for us and continue to do for us.

If Grandpa is on the floor, the kids want to follow. If only they could follow him by falling asleep!

Grandma B can always get Keith laughing

Grandpa B and Keith having fun

Grandma B and Ally

Keith, Chels, Uncle Shea and Cole

Cole posing with Aunt Chels (above) and Aunt Darel (below).

And, just for laughs, I had to throw in this picture of Cole. He has to be the best source of comic relief these days. He spends 90% of his day in pajamas and when he does don "clothes" they are in the form of Spiderman swimming trunks and some form of Superhero t-shirt. There are only 3 shirts that make the cut and two are identical to each other. He usually insists on wearing rainboots, even if the weather is sunny and above 80 degrees. At least he'll wear a helmet, right? I'm learning to recognize the positive in EVERY situation!