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!