“The doctors let me start to eat regular food again today. I had raspberries, hot cocoa, animal crackers, sun chips, banana bread, cup-o-noodle, french toast, a chocolate malt from Loard's and Annie's white bean & chicken chile.
My dad took lab samples of blood from my Broviac and didn't mess up too bad. The nurse watched.” Keith
Parent's note:
Keith did really well again today. More exercises out of bed and for a while was completely unplugged from his IV tower. Ben, a friend and neighbor of Keith told a knock-knock joke that made Keith laugh that goes something like this....'who's there....SPELL....spell who?....W...H...O
It was nice to see Keith happy again. And all that food he ate... Still the nurses want him to eat more before they will take out the feeding tube.
WEDNESDAY, AUGUST 30, 2006 10:12 PM, PDT
“I didn’t really do anything new today, but I did lots more of everything. I ate more and I walked and exercised more. I really liked the video made by all my friends at school, but I’m sorry to say some of those jokes are really sad! Oh, and it looks like I am going to start getting homework soon so I guess I won’t be getting off too easy. The nurses aren’t really paying much attention to me anymore so my parents say that means I must be getting better.”
Parent’s Note:
Maybe it’s the constant Food Network programs that he tunes into, but Keith is really hungry now and since has been given carte blanche to eat whatever he wants by the doctors he is taking advantage of it. Today it was sushi, followed by more white bean & chicken chili with a request for homemade corn bread and some chocolate instant breakfast to wash it down. Yum. Kind’a eclectic but hey, we’re in
Now that Keith is feeling better, he has enjoyed having a few of his friends stop by. Also, there is an art program here in the unit and Keith was able to start a ceramic painting project. He was into it for a while, but then the odors from the paints got to him so it’s on temporary hold for now.
Keith received this great banner signed by most of the roster of the Michigan Wolverines and has it proudly displayed on the wall opposite his bed, and the video of Keith’s classmates was a huge hit and he smiled and laughed at the silliness of it all. I could tell he wished he was there though… (thanks Julie, Clare and Cynthia for making it happen!).
I'm not sure we can even begin to thank everyone… so to all who have sent Keith well wishes, cards or fun things and to all of our friends who have helped Josie, Scott and me cope over the last few weeks with nourishment of the body and mind we hope you understand how much we appreciate all of your efforts. It is almost impossible to formally thank everyone but we will do our best. Please understand how much we are grateful for your acts of kindness in the event we are unintentionally silent.
THURSDAY, AUGUST 31, 2006 10:08 PM, PDT
“I played six rounds of Fluxx with Scott when he visited after school. It's a fun card game. The doctors think I am doing so well that I can start the next chemo pretty soon.” Keith
Parent's Note:
Keith's white blood cell count has jumped to 9,500 (normal is 5,000 to 10,000). On 8/22 it was less than 100 ! That means that despite his rendezvous with the ICU earlier, he is still on track for his second course of chemotherapy and it sounds like it might start as early as Sunday. They don't cut you any slack around here at CHO!
FRIDAY, SEPTEMBER 01, 2006 09:34 PM, PDT
“Today I was able to leave my room and go down the elevator and outside into the garden court of the Hospital (I did it twice!). They have a Game Cube on wheels here on my floor so we rolled it in my room and I played Monkey Balls and Pikmin for a while. Kaiser and Trevor visited me today and that was great. Also, my hair is really starting to fall out so I look kinda’ brutal.” Keith
Parent’s Note:
Keith was exhausted but so happy to get outside and to see a couple of his friends. He looks like himself again (except for the thinning hair) and it’s great to see him smile and laugh.
Looks like we are indeed on for course #2 beginning on Sunday but the really good news is that Keith may get to go home sometime late next week if all goes well!
Too late for the Mohawk now – if you try to comb his hair it simply falls out… Check out the “Photos” tab and click on the ‘View Larger Image’ link on the last image (the one that looks blank). You should see an animation of what Keith might look like in a few days….
SATURDAY, SEPTEMBER 02, 2006 09:19 PM, PDT
Today was my last ‘free’ day because chemo starts again tomorrow. Oh and Mrs. Howard stopped by my room to tell me about what’s going on in 5th grade. Now I have all the textbooks that are being used in class so I can try to keep up. Thanks to all my 5th grade friends that sent me get well cards from school – they’re great.
Parent’s Note:
A relatively quiet day as things go around here. It looks like they will start the next 72 hour chemo course tomorrow evening with the usual lab work done in the morning to make sure all systems are go.
Go Blue!
SUNDAY, SEPTEMBER 03, 2006 10:58 PM, PDT
Parent's Note:
Keith started his second course of chemo around 7pm after a quiet day interspersed with regular visits by the medical staff to make sure all of his stats met spec so to speak. In addition to the 3 chemotherapy drugs that he is receiving he is also being given an alternating course of 5 drugs to help control nausea. He is also recieving another drug to protect his bladder as the chemo drugs are so toxic. It is important that he stay well hydrated, so on top of all the other lines feeding into his Broviac, he is also receiving lots of fluids to keep things moving through his body efficiently. He is definitely plugged in again.
He has a great attitude though, and lots of inner strength. I don't think he ever mentioned he was scared or that he didn't want the chemo or that he didn't want to get sick to his stomach again. His only request was that he not wind up in the ICU this time around.
I think we all feel the same way about that...
MONDAY, SEPTEMBER 04, 2006 09:21 PM, PDT
Parent’s Note:
We have had our fingers crossed hoping that this round of chemo would be easier for Keith - and so far so good. After one day on-line he is still feeling ok – no nausea, cheerful, comfortable and still eating well (although we’re scratching our heads at his odd craving for the cafeteria chili…)
We did the usual daily lab draw from Keith’s Broviac. After the draw, the protocol requires the line to be flushed with saline and then Heparin to prevent clotting. Apparently while the line is being flushed with saline, Keith has a strong taste sensation. He says it tastes like green beans while sucking on a penny (why couldn’t it be chocolate or something pleasant?). So clever as we are, we’ve come up with a solution; Keith pops a breath mint while we flush and everyone’s happy.
Keith spent a mostly quiet day in bed with Food Network providing most of the entertainment although we did manage to drag the IV tower into the shower with him to freshen him up a bit. Perhaps the biggest event of the day was Keith loosened a molar while chomping on some pretzels and the nurse came in and yanked it out. Later on she said it was the first time she ever had to pull a tooth and it was the most exciting thing she had done in quite a while! The things we do to keep the staff entertained…
Lastly, Kirby (Keith’s cat) just turned 9. Since Keith was not able to do so in person, he asked Scott to wish Kirby a happy birthday for him.
TUESDAY, SEPTEMBER 05, 2006 10:01 PM, PDT
Parent’s Note:
Keith has been feeling the effects of the chemo treatment today. His appetite has dropped off and the medications are making him feel rotten as one would expect. He has been sick to his stomach a few times today, but compared to the first course of chemo it seems like he is tolerating this treatment much better.
Having said that, it was about 60 hours into his first course when he began to have breathing difficulty that eventually led to a scary visit to the ICU. As of this entry he is about 51 hours into his treatment and so we will be monitoring how he feels during the night and into the morning very carefully. If we can just get through this course without any major hitches Keith should be able to head home later this week for the first time since he was admitted on August 9th.
Kirby will be so happy to see Keith and visa versa.
WEDNESDAY, SEPTEMBER 06, 2006 11:01 PM, PDT
“The first thing I want to do when I get home is see Kirby.”
Parent’s Note:
We’ve made it! At 7:15pm the chemo drip was turned off. Since yesterday afternoon Keith has not been sick to his stomach at all and his vitals have been rock solid. They say the second course is usually easier than the first and that seems to be the case. Keith even got out of bed this afternoon and was bouncing a ball down the hallway with the physical therapist.
So what does all this mean? If all goes according to plan sometime on Thursday afternoon we will be packing our bags and heading for home!
On the day Keith was admitted we were given a fat binder full of instructions of what to do and what not to do to care for Keith and his special medical needs. As Josie will attest I’ve never been very good at “reading the manual” but I’ll make an exception for Keith. While the details of how we will care for Keith at home are still somewhat fuzzy, we’re looking forward to figuring it out. The nurses have been working with us for some time to make us competent once we are home in dealing with administering medication, drawing labs, changing dressings, knowing when and when not to call the oncology department, and making sure that there is always a Broviac clamp at the ready. I have to confess, we’ve gotten a bit used to pressing that little red call button at his bedside when a pump alarm goes off in the middle of the night. There won’t be any RN’s to rush to his side now - we’re it for a while.
Thankfully to soften the transition from hospital to home we can count on Alton Brown (Keith’s favorite) and the rest of the Food Network personalities to continue to provide nourishing entertainment…and we get better reception to boot.
So it looks like we’ve won the battle for now, yet the fight as they say is far from over. We’ll be seeing our friends on the 5th floor many more times. Still we’ll celebrate the victories at every chance we’re given. I suppose the irony of life’s hardships is their blunt way re-focusing one’s values. At least for me even mundane routines are somehow elevated to special status when it involves time with family. Life’s a fleeting moment and life’s a true gift.
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