July

I don't know where to start so I'll just quickly cover July as best as I can. The day after we found out about Keith's negative biopsy results we felt such relief and joy. I tried to process it all that next morning during my run and my spirits couldn't even be dampened by the bird that unleashed it's Friday night buffet on my bare thigh. I laughed to myself and used some nearby pine-needles to scrape off the load of sticky refuse and felt so grateful to just keep on running and enjoy the moment of relief from a heavy burden we had felt for several weeks.
It was liberating to cancel our original plans to start chemo again. We had already selected a clinical trial and we had a start date of July 17. When that date came and went, it was pretty humbling to recognize what we didn't have to watch Keith suffer through. With this perspective, it has helped with the challenges of the last 6 weeks.
Keith continued to have seizures in the first part of July and we didn't like the side-effects of his original anti-seizure medication, so we are in the process of switching medications. This takes several weeks because you have to slowly introduce a new one and slowly taper the old one. Meanwhile, it has caused Keith's sleep to be all over the place, mostly in a state of not sleeping but very tired. It's been difficult to see his progress slow to almost nothing because he's so tired all the time. He has missed several Physical Therapy appointments and all of his summer preschool because he simply cannot function in this ever-changing sleep/awake cycle. Needless to say, it has been exhausting for Brent and I as well as our parents and our siblings who have helped out this summer. My sister, Darel, has spent most of her summer at our house before she goes back to BYU next week. She has been a lifesaver! I think she's ready to go back to college where she will actually sleep more than she has all summer. I hope I haven't scared her from motherhood forever. The two of us had grand plans for getting the kids out and about this summer and we've done our very best but it just hasn't gone as planned. Sometimes one of us would just take Cole and Ally out but most of the time, we would try to get Keith out too, even if it was for a limited time.

A few really exciting things for Keith has been watching his hair come in so nicely and watching him chunk up a bit. It's amazing how much healthier he looks with a few inches of hair on his head and a few pounds on his cute little bod.

We also made a trip up to Yakima in July while Brent traveled. In addition to these pics, Syd and Nick made a video that can be found here.

Thankfully, Keith's seizures have stopped. So, the medication is doing its job. He still continues to be nauseous as he vomits once or twice daily. We are told that whatever it is in his brain is causing the seizures and the nausea. So, while we are so very grateful the biopsy came back negative, it's still difficult to see such extreme side-effects from something that is "unknown." Knowing what we would be going through right now if it was cancer, helps us be patient and keep the situation in perspective.
One other really neat thing for us has been getting to know Keith's personality better this summer. It may seem strange, but after him spending the last year and a half so sick, he didn't really have a lot of chances to be feeling well enough to show his personality other than the "sick Keith" which is still an amazing little person. But it's been fun to watch him be such a friendly little guy verses the kid who cried anytime someone in the clinic looked at him for fear of what was coming next. Now, whenever we are in the clinic, he waves to everyone that walks by and often says, "What's your name?" "My name is Keif." He will then ask you if you like rocky road ice cream or if you like Smarties candy. Or he might tell you that he went to the "big Ice Age movie". He's very repetitive and just so darn sweet. He tells Brent and I, "I love you" over a dozen times every day. He'll say, "Hey Dad! I wub you." It melts us every time. His favorite game right now is playing "Pigs and Wolves". He hides behind a door and the other person pretends to be the Big Bad Wolf and huff and puff and blow down the door. He plays this 24 hours a day and night! I try to be patient when he wants to play at 2, 3 and 4 in the same morning!!! He's just too sweet. You cannot tell him no when he wants to play "pigs and wolves". I might have to take it up with Grandpa Burnett who started this game in the first place...! He loves it and it gets him moving so I really can't complain. Anything that makes him happy, makes us really happy. I've never known such a sweet and innocent person. He is truly "without guile" and angelic in every sense of the word.