Tuesday, July 31, 2012
We just met doctor number four up here: Dr. Meeker. Cool guy. Only a year older than me. I find that kind of sick and wrong that these brilliant doctors are so close to my age. They all need to be much, much older. Darn. I guess that means I'm getting old.
But I digress.
Dr. Meeker has a reputation for getting kids out of here and at home. He told me even thought it is risky (infection wise), he believes they flourish in their home environment as long as the parents are careful and competent. Guess I meet those stringent qualifications because he is hopeful to get us out of here sometime Friday after Chemo. Whoo Hoo. Trying not to get excited or anything... but Whoo Hoo.
Kean's counts continue to creep up. He's at 170 today. Once again, his "counts" are the soldier cells that kill germs-- if that helps clarify things.
In our home, we play a game with the girls to get them to tell us a little bit more about their days at school. It is called "the Rose and the Thorn". They have to tell me a rose - something good about their day and a thorn - something bad about their day.
So here's the rose: my friend Angie S. came up and spent the night last night with Keanut so I could go home and be with the girls on their first night home from the Family Reunion. It was great. The little chicks talked non-stop and were bubbling over with details of their adventures. I slept like a rock at home. I don't think I moved one bit from eyes shut on Monday night to eyes open on Tuesday morning. The girls and I got up early and picked - get this- about ten gallons of blackberries. My mom and Byron came and helped too. The girls have decided to save half of their berry money for a Disneyland trip in 3 plus years when Kean is done with his Chemo and half will go for children's Cancer research. They came up with that themselves. So proud!
Okay and here's the thorn. It is now after 5pm and Keanut hasn't had anything to eat since breakfast. He is on another forced fast... something that is just too darn common in here. He was supposed to go under between 1 and 2 pm to get his central line cleaned up and fixed (it is oozing again). But now it seems like they have decided to do a PIC line instead since this one is giving them such heartaches. Poor boy has been crying and biting his fingers for hours. He doesn't want me to touch him-- so I'm writing this and trying to will the doctors and nurses to get in here and get him. The super sad news is they came and got us an hour ago. Started setting us up in the surgery room, then had a kiddo a few doors down stop breathing. So we were escorted back to our room to wait. Personally, I think they got tired of hearing Kean cry.
So here we sit: waiting, waiting, waiting.
Monday, July 30, 2012
Sunday, July 29, 2012
Saturday, July 28, 2012
Just earlier today, I posted about how nice, dull and boring it was in here today. And don't worry, things stayed calm in here. Let me repeat that: in here. But out there... a bit crazy. I started getting calls late this afternoon from neighbors looking for Byron. A brush fire started about a mile from our home and was growing bigger and heading in the direction of our place-- again!
It was almost exactly two years ago, that we were evacuated, much of our land burned up and our two neighbors lost their home in a fire through the foothills of Eagle. Here's a link to my post back then with pictures of how close it came.
We dodged the bullet back then and lucked out again today. Byron called about three hours later to tell me the fire was well under control and didn't make it very close to our home. Still some nervous moments for everyone.
Friday, July 27, 2012
Thursday, July 26, 2012
Wednesday, July 25, 2012
Tuesday, July 24, 2012
Monday, July 23, 2012
Sunday, July 22, 2012
I'd like to express my eternal gratitude to the inventors of Morphine and the Antibiotics Kean has been on. Last night, his nurse told me his X-rays look good and hopefully the Doc will choose today to let him eat and drink. He also had his best sleep in this place ever! He only woke up one time-- and that's with the nurse coming in and taking his temp, blood pressure and vitals every few hours!
One final bit of great news, that same wonderful nurse told me he is doing amazingly well, better than most kids she see's with Down's getting Chemo. So your prayers are working. Thank you!
P.S. The blackberries are coming on. All you locals who want to buy mondo, scrumptious, organic (and inexpensive) berries from the girls-- email me for details and to get on their list. firstname.lastname@example.org
Saturday, July 21, 2012
The torture chamber is still in business and I think it has about put my mother over the edge.
She and my 93 year old- wonder of the world- grandmother came up to "spell" me.
By the time I got here this evening, my mom was in tears.
It is oh-so-rough watching Kean in pain and not understanding why he can't have even a sip of water.
The only saving grace is the Morphine that takes some of the edge off a very edgy boy.
And of course, we all took him for endless wagon rides. That is one of the few sure things that he finds calming.
They X-rayed his belly and chest today. We have not heard the results but the doc said he is hopeful we can start him on liquids tomorrow if all looks good. He said better to have him suffer through a few days of hunger and let his bowels rest than have his gut irritated for a week or two. The swelling is way down. So I'm hopeful tomorrow the imposed starvation will come to an end.
Friday, July 20, 2012
As I sit down to write this, the little one is asleep, whimpering, but asleep.
He has had one rough day. As mentioned, he can't eat or drink anything but those darn Steroids make him feel like he's starving. So poor Byron (love that guy) pulled him and his IV tower around in the wagon for 2 1/2 hours to try and keep his mind off of F.O.O.D.
He is on IV nutrition, just in case you were worried the docs were starving the boy-- but it does nothing to make his tummy feel full.
Some good news: the antibiotics have kicked in. The swelling to his belly is nearly gone. And we think we are finally on top or ahead of the pain with the Morphine.
Byron took over for the afternoon and evening. I went home and completely crashed. Between a nap and a shower, I feel less zombie-like and as a bonus, I smell like soap again (instead of vomit). Hey, I'm not forcing you to read this blog.
We had no fireworks with his Bone Marrow procedure or Spinal Tap (unlike last week with the breathing difficulties and IV failure). We should get his results back on Monday to tell us how much of the Leukemia cells have been blasted to hell -- where they belong. And as if he's not getting enough medication with FOUR different antibiotics, he got two doses of Chemo today-- directly into the Spinal Tap. I can't forget that we still have to fight the Cancer while now fighting the infection. It is a lot.
Three bright spots today. One of the heads of our bank came by the hospital today with a card and stuffed monkey. I can't imagine that happening in Phoenix or LA. I love it here.
My amazing Visiting Teachers (two women assigned to visit me each month from church), Pepe and Teresa sterilized my house today... in the hopes that Kean will be coming home sooner, rather than later. They worked their tails off.
Also, we got three birthday cards in the mail today for Greer! My friend Stacey had her boys make birthday cards for Reese and well, it's nice to know I'm not the only sleep deprived mom. It gave me such a laugh today when I opened the mailbox. Thanks for making the mistake!
Thursday, July 19, 2012
Wednesday, July 18, 2012
Tuesday, July 17, 2012
I must be getting some help from up above because in spite of the fact I've had hardly any sleep in this
torture chamber hospital, I'm not quite as bone tired as I should be. Go figure. Saint Dee (my mom) came up to stay with Kean and sent me home to do laundry, get a nap and a much needed shower.
Kean is about the same. His blood numbers look good enough that he doesn't need another blood transfusion for now. However, his ANC or Absolute Neutrophil Count is down below the safe zone-- so from now on he's at high risk for infection. The "powers that be" let my mom take Keanut down to the playroom for an appointment-- he had to be the only person in there (except my mom and the specialist) and they had to completely sterilize the room before his visit. So our lives have moved into the next phase. Germs will be enemy number one from now on.
When I got back from my little hiatus, he wasn't feeling too swell. About ten minutes after my return he threw up, then repeated the vomiting two more times. So much for clean clothes and smelling like soap!
He's asleep though and hopefully will feel better tomorrow. Poor little guy. With all the meds being squirted into his mouth or shot into his body via the IV's, I am amazed he has not grown a second head or at least broken out in hairy purple spots! The nausea -- we've been expecting. But it still sucks.