Friday, August 31, 2012
Today was one of those days where I would have liked to trade places with any number of you.
Kean woke up not wanting to drink or eat much of anything.
Which translated into one very stressed out mom.
How do you explain to the little guy if he doesn't drink at least 25 to 30 ounces
he gets to go to the hospital and have a feeding tube pushed down his nose.
I tried pleading, bribing, tricking, and yes, I'm embarrassed to admit, I even yelled at him a bit.
I think I'm losing it slowly.
Finally, by my noon deadline, I called the hospital to report I had gotten him to drink 10 ounces (which mind you, was no easy task).
I told them I was confident I could get the rest down him.
And once again, they believed me.
So after naps we got to work.
Thank heavens, I have my secret weapon: Greer - who never tires of trying to get him to drink:
I just put him to bed and boy, we somehow made it.
26 ounces. Yup... 26.
Dodged the hospital for another day.
Tomorrow we start from scratch-- again.
Thursday, August 30, 2012
Today was quite the mixed bag when it came to news at the hospital.
Let's get the ugerly stuff out of the way.
Kean's blood work shocked us - his counts are way low.
This, after being so great last week. His Neutrophil (his ability to fight germs) counts are at 340. If you have kept all the numbers straight,
you will remember they wouldn't let us leave the hospital until his counts were at least 500.
So my heart fell to the basement when I saw the numbers.
However, they let us leave but under strict orders that if he so much as coughs, has a runny nose or a slight fever- we are
back, well, you know where.
So that was some bad news and some good news.
The other bad news is he is still not drinking and peeing nearly enough.
In fact, with his body fighting Cancer, he should be drinking even more.
They gave him a 2 hour IV of fluids at the hospital today and are thinking of putting in an NG (feeding tube down his nose to his stomach) to help keep him full of fluids. The good news is I talked them in to letting me see how he does tonight and tomorrow morning since he had the IV today. So pray and pray hard the boy will drink like a wild man.
The doc told me it is not uncommon for these little kiddos to cut way back-- all the drugs they are on makes food and drink not taste the best. But the bad news is we'd have to stay overnight in the hospital to get the NG tube and then see how he handles it.
Back to some good news-- his Spinal Tap and Chemo went smashingly well today.
The drug they give him to go night night is the same one Michael Jackson O.D.'d on.
They keep a pretty close watch on the boy... and he handles it quite well.
The other good news today... is that the news was on the 4th floor.
Remember how I told you about one of Kean's favorite nurses, Joe and how he and all of his siblings work
at St. Luke's? His mother was the one who was told she wouldn't survive Cancer and she would take the kids
with her to St. Luke's while she was treated.
Anyway, the local NBC affil here is doing a story on their family for their 7's Heroes segment.
They shot lots of video of Keanut and Joe together.
Here's Joe getting interviewed.
And here's their entire family. I'm telling you, this family is amazing.
They are wonderful, kind, compassionate people-- a bit camera shy-- but very deserving of the spotlight.
The story is scheduled to air on Sunday, Sept. 9th. I'll remind you and put a link on the blog.
Wednesday, August 29, 2012
Ah.... routine. Love it.
Day two of school went much better.
The bus wasn't quite as late.
Holland successfully tackled her locker combination
and Reese and Greer came home all smiles.
Tired, but smiling.
I think they are pining away for the glory days of summer.
And man, have they been glorious.
Last Saturday was what we around here call "Mary K Day".
For years, Mary K has taken the girls out for their birthdays and spoiled them rotten.
This year was Reese's first year to get to go-- and Mary K took them all
to the fair.
They did it all... rides, cotton candy, fried food and games.
She's not only a good sport-- she's a saint in my eyes
and in the eyes of the girls? She's beyond a saint... she walks on water.
And has earned coolest adult in the universe status.
As for Keanut... he had another good day. The gap on his incision has scabbed over
so I'm hoping it won't be a big deal when he is checked over at the hospital tomorrow.
He is scheduled for another Spinal Tap and dose of Chemo in the morning.
It should be the last one in this phase they call "Consolidation".
Since we have procedures and Chemo on Thursdays, I've noticed Kean's best days are Wednesdays.
Momma Gump, his favorite therapist came today and he did great... he's really starting to put weight on
those skinny little legs. He also took a wild spin on his new bike.
The clicking noise you hear in the video are the blinkers on the bike.
It's a pretty cool ride.
And here's what I did today, while the boy took a nap.
I bottled up and made jam out of the blackberries and the raspberries from our garden.
It's so nice to have a good day.
P.S. I think Byron has the flu.
He's staying quarantined in our room. Cross your fingers it is short lived and not contagious.
Tuesday, August 28, 2012
I figured you'd like an update on Keanut's plumbing. Let's just say the pipes are flowing better than
yesterday! I was supposed to take him in to the hospital today for a follow-up but I have them convinced
I'm a responsible mother and they actually trusted me to keep an eye on him and report to them if there was still a problem. We go in on Thursday for his weekly Spinal Tap, so they can look him over then. But his Cancer doc did refer us back to the surgeon to take a look at his incision. As I mentioned last night, it has a gap. I know this isn't the best picture but you can see it doesn't look great. I'll let you know what he has to say.
Today marked the return to a normal schedule. School started.
Reese was thrilled to be going "all" day. And she told me later her favorite part of her day was getting
to eat lunch at school. I had forgotten what a big deal that is when you are in first grade. Greer is in 4th grade and Holland started middle school-- 6th grade-- oh my!
Aren't they cute waiting for the bus? Love how they love each other (most of the time).
And then they were off... and my house was eerily quiet.
Kean had a good day. You can see the swelling in his face and belly is going down and fast!
He couldn't get enough of playing with Holland tonight.
The two of them rolled around and giggled.
They were much more entertaining than the RNC on TV.
While Holland and Kean frolicked, Byron took Greer and Reese to get their hair cut for school.
Yah, we know school already started... but life got in the way.
Monday, August 27, 2012
Brace yourself for another discussion on Kean's plumbing.
He stayed dry all last night and had a wet diaper on the small scale.
His doctor had us shove liquids down him and keep track.
By 1pm, he finally had another wet diaper-- but barely so.
So they sent us to the E.R.
Just too many days of sparse diapers.
In our five hours there, they tested his bladder (it had a normal amount of urine), did blood work (other than
the Leukemia crazy numbers-- all looked fine), his kidneys and liver looked good so they gave him two "bolus" IVs.
We walked and walked and walked the halls while the IVs dripped -oh-so-slowly into his system.
Kean smiled or blew kisses to just about everyone there. He was quite the hit.
Finally, 4 1/2 hours into the liquid-fest, he had a normal diaper.
Who knows what in the world is going on... but they did let us leave at 9pm tonight.
We've earned another trip tomorrow to the Cancer clinic to see his Oncologist.
The incision where they put his port in has a little bit of a gap in it. So I'm not sure if we are going in for Dr. Camilo
to check that or check up on Mr. Peebody.
At least we are home, sweet home. Tomorrow is the first day of school for the girls. They were
quite concerned we'd be stuck in the hospital for the big school milestone.
Sunday, August 26, 2012
Of course after I blogged last night about Kean's horrible sleeping habits, he gave me one of his better nights.
Perhaps I should complain again?
Part of the problem is I am having to wake him up to give him certain medications-- one is two hours after he eats or drinks (and since he usually has a bottle right before bedtime, I am waking him up for that). And the other comes 48 and 60 hours after his weekly Spinal Tap. Therefore, I'm usually waking him up again.
Trust me, waking up a sleeping baby is almost as mentally painful as those shots. It is sick and wrong!
We went over to my folks tonight for our traditional family dinner.
As you an see, Kean adores his Grammy and loves playing Patty Cake.
This will be the last get together for a while. My mom is leaving in a few days for almost a month-- she is going
on a trip with all of her sisters and her mother to visit another sister in Moscow. Rumour has it, my aunt and uncle's apartment is bugged by the Russians. With my mom and all of her sisters staying with them--
all I can say is it will be highly entertaining. The Russians have no idea what they are in for.
On the Keanut front-- boy is he happy. He did all the stairs at my mom and dad's house. Which is worth mentioning
in that a week or two ago, he was exhausted after tackling just a few stairs.
slightly somewhat worried that the boy is not peeing enough. He has gone all day with one dry diaper.
And his output over the past few days, well, it's been less than stellar.
I'm pushing liquids as much as possible. He's not drinking nearly as much as he was-- but I'm worried
something is going on. I'm giving it over night before calling the ol' doc.
I figure I can write here about his peeing-- since way back, I spent a whole paragraph talking about his epic pooping.
Ah, I'm not so certain this is what I had in mind all those years ago when I decided to major in journalism.
Saturday, August 25, 2012
Our summer camping plans have gone out the window. But that didn't stop the girls from talking
their dad into having a camp-out in the camp trailer last night. And no, we didn't have a fourth daughter
and fail to tell you about her-- the girl in the yellow is our neighbor Jaiyme (she's Greer's age).
I'm certain they slept better outside than Kean and I slept inside.
He continues to have some pretty rough nights.
I don't get it. He seems to feel quite good during the day
but at night he's, well, um a nightmare.
The only thing I can think of, is when he was on Steroids, he would literally wake up
in the night hun--greee. So perhaps he just has a nasty habit of wanting to eat at night. He's waking up every night
and is up for an hour to two.
It is driving me slowly insane.
P.S. the trike is mostly put together and boy oh boyardee does he like it!
Friday, August 24, 2012
Kean had a bit of a rough night-- which wasn't too much fun for his folks.
I had been whisked away for a night at Idaho Shakespeare with several girlfriends.
We saw the Imaginary Invalid and loved, loved, loved it.
Thanks Mary K for a much needed night out.
So I thought we'd be shaving Keanut's hair by now. His back is looking pretty sparse...
But his top and front are hanging tough.
As one friend of mine put it (who went through this with her daughter)... it's like Easter grass...
you'll find their hair everywhere.
And that's about how it is. I thought, for some reason, I'd find clumps of his hair on his pillow...
but it seems to be just a slow shedding. It gets thinner and thinner.
But since the kid has a ton of hair to begin with, he's not looking to nappy......... yet.
One final note - a sweet one.
I got a card in the mail from my cousin's daughter. Kathryn and Jeff haven't been married all that long
and already he has braved (and is braving) a repeated round of Cancer.
She sent me the most thoughtful note and made the bracelet above.
Let me share with you what she wrote:
The heart symbolizes the love that is felt for you near and far, the angel wing is for hope. Hope that Kean can become healthy and that one day this will all be over and done with. And the faith (medallion) is a reminder that God is with you each moment and that you can get through the tough days.
If anyone can speak or write from experience, it is Kathryn.
They have a cute little girl and I can't imagine it has been easy having the big "C" hanging over their house, zapping Jeff's energy. But they seem so hopeful and so positive.
There are so many heroes out there don't you agree?
Thursday, August 23, 2012
I know I told you earlier that today was the day for Kean's weekly Spinal Tap and Chemo session.
His last one in this phase is next week - then we get a tiny break before moving onto the next phase.
We got to use his port for the first time and it worked beautifully-- I don't know if you can tell in the picture
above, he has a numbing creme slathered on his chest with a piece of "press and seal" over it.
This is how I found him after the procedure while he was still asleep-- pretty cute tushy, eh?
As I said, he did great. Today, in the big scheme of things, was a breeze. He took a good hour to come out
of the drugs and wake up... but he woke up pretty happy and just went uphill from there.
We came home to several surprises--
Remember my old buddy, Rob Macey? We met up with him and his family at Disneyland last Spring.
He was one of my favorite photographers-- we worked together in Phoenix and L.A.
Well, he sent a box of hats for Kean....
Once he loses his hair, he'll be sylin'-- that is, if I can keep the girls from stealing them. They love the hats.
Then my friend Angie stopped by with a belated birthday gift for Keanut--- a big, snuggly green piggy blanket
that he can take with him on his hospital days.
And finally, the UPS guy showed up with a huge box.... from our family, the Klingler's who
are serving as mission president for our church in Figi. They sent Kean the coolest bike-- decked out
with a toy bin, a sun cover and a water bottle.
Reese was especially impressed and excited.
Byron will put the bike together this evening... for now, the box is proving to be pretty popular.
What a fun thing for Keanut to come home to-- it felt like Christmas in August!
Wednesday, August 22, 2012
Just to keep me on my toes, Kean has gone from Olympic power eating to eating like a bird.
The docs had warned me this would likely happen. But how strange to now worry about whether he
is getting enough to eat after the gorge-fest we've gone through.
His therapist, Maureen (Momma Gump) was here this morning and we agreed the steroid swelling
in his face has gone down a bit.
We also had a session with his brand new Physical Therapist, Katie (who I clearly failed to get a picture of).
I think we will really like Katie-- she got him to put a lot of weight back on those spindly legs. But her coming is bittersweet for us-- it means we officially say goodbye to Pat, his PT who has been with him for the past two years. Pat is part of our family and it will be hard (probably harder for me)
to not see her or have her calming spirit in my home each week.
Tomorrow we go back early, early to the hospital for Kean's weekly Spinal Tap. The protocol he is on this month
calls for a weekly Spinal to put the Chemo drug- Methotrexate directly into his spine and brain. This is the drug
Down syndrome kids don't assimilate, so Kean has to take another drug at precisely 48 and 60 hours after the Spinal.
So far, he seems to be tolerating it all.
He also gets another dose of Vinchristine-- this time through his brand spanking new port.
I have to put a numbing cream over his chest where the port is (under the skin) about an hour before we leave
for the hospital. Once there, they will (thank heavens, not me) put a needle into his chest, right into the port to take some blood samples and later give him the Vinchristine.
I'll let you know how it goes.
Oh, one final note... we picked blackberries today.
They are winding down-- but the girls have made nearly $800 dollars this summer on the project.
Remember, half will go towards taking Keanut to Disneyland or somewhere fun when this Cancer business is all over
and the other half will go
towards children's Cancer research.
This is what I made with the leftover berries....
Yes, Kean may have a problem with eating right now... but the rest of us will be making up for him.
Tuesday, August 21, 2012
Things are about as normal around here as they can be.
Or as we can make them.
Kean can't be around people, especially children but that doesn't mean he can't get out.
Byron took him for a short ride on his old motorcycle and wow, did he love it.
And we decided to get creative in the "eating out" category.
The girls had earned some free dinner vouchers at Applebees for reading.
So we went on line, ordered dinner and had them deliver it to our car.
Check this short snippet out and pay close attention to the level of noise.
I think all the kiddos were over the moon at getting out as a family.
Monday, August 20, 2012
One of the definite benefits of Kean getting sick is that we get to keep some of our same therapists.
Since he can't go to school for a year, he has to have his schooling and therapy at home.
This is Meagan, his speech therapist.
We have really seen the Lord's hand already on this journey and Meagan was a big part of it.
I don't think I put all of this in the blog but going back to the very beginning of this story-- if you remember it all started
with a fever for Kean that wouldn't go away. Then on a Saturday, his right arm swelled up and was very painful.
A trip to the Emergency Room told us they suspected a bone fracture (an occult fracture that is so tiny it doesn't show up in X-rays). We were referred to a Pediatric Orthopedic Surgeon and when I called first thing Monday morning, he couldn't see Kean until Tuesday afternoon-- and Kean was in P.A.I.N.
I had forgotten that Meagan was coming for therapy that Monday morning. If I had remembered, I would have
cancelled her visit since Kean was in no shape to do any work.
She walked in the door, saw Kean's splint cast and said "Oh I know exactly what you are going through"... her 18 month old Kate had broken her leg a few days before. She mentioned that she had gone to the best Pediatric Orthopedic Surgeon-- who I immediately called. And surprise of all surprises, he could see Kean at lunch time.
That doctor; Dr. Buzz Showalter's son had cancer when he was a five year old-- so Dr. Showalter picked up on the slight variations of the bone marrow in Kean's X-ray.
Mere coincidence? I think not.
In fact, several folks at the hospital have told me there is no way the original doctor we were slated to see would have ever picked up on the Leukemia.
We like to joke that Meagan's little Kate-- had to break her leg so Kean could get his Cancer diagnosed as quickly as they did. Because by the time we got the blood results back on Tuesday morning and got him to MSTI (Cancer center) on Wednesday, he was going downhill fast and in an unbelievable amount of pain. They told us his Leukemia cells were at 100 percent-- they had totally invaded and taken over his bone marrow.
So now you can see why Meagan is so special to us!
On the shot front.... it is getting easier. Oh, I still hate, hate, hate giving my boy shots twice a day but
I am over the getting physically sick to my stomach each time I have to do it.
I guess practice makes perfect. And geez, I've had a lot of practice. We've filled up our first Sharp's Container
and they are delivering a second today.
Onward and upward.
Sunday, August 19, 2012
I have decided I feel somewhat like a hamster racing around in one of those wheels.
Every day Kean gets feeling a bit better and then zap... he gets Chemo and starts the rotation again.
At least I know we only have to get through a few bad days before he starts feeling on the mend.
He had a rough night last night (which means Momma had a rough night).
So of course, he had a marathon nap today.
My mom came over while he was taking his 4 plus hour
nap so the rest of us could go to church together as a family again-- it's been quite a while.
In our quest to keep things as normal as possible, we went over to my parents house
for our traditional Sunday dinner get-together.
My sister-in-law's mother Nedra always joins us.
About thirty years ago, she lost a son to the same type of Leukemia Kean has.
She has given me some of the best advice throughout this ordeal--- namely that this is a Marathon, not a Sprint and
how important it is that I pace myself and not get caught up in the emotional roller coaster but instead try and stay as calm as possible. All good advice, don't you think?
Anyway, she came to my rescue tonight. I was supposed to take off the bloody bandages over his port incision
and was so worried they would be stuck.
She handled the dirty job for me and it wasn't bad at all. Phew!
Kean must not have been too traumatized because after baths he went back to his old
trick (before he got sick) of climbing Grammy's stairs.
He didn't get too far but it's a start and good exercise.
We sure love our little butterball!
Saturday, August 18, 2012
I was dreading today. After seeing how miserable Kean was last night and then getting up with him every few hours during the night-- I thought today would be a rough one.
But get this, my little Spartacus woke up this morning happy and smiling.
Oh, he had his moments but he was nothing like the child who was in so much pain last night he could hardly move.
In fact, he was actually crawling around quite a bit by this afternoon.
Silly me, I forgot to take my daily pic. So you'll have to do with the following.
Meet one of my heroes: Izzy.
She is my cousin Carrie's daughter-- the same age as Greer.
When Izzy was 3, she was diagnosed with A.L.L.-- the same kind of Leukemia Kean has.
She went through more than any child should have to suffer through and had the same "fluffy" face,
poofy stomach and spindly legs that Kean has from the Steroids.
She lost all of her hair and look at her now-- she is healthy and beautiful and sweet, sweet, sweet.
Her family is visiting from Virginia and took the time to come visit us to share stories,
encourage us and give us lots of hugs.
Carrie and her husband Corey hooked up with some of my other cousins and took Holland and Greer
to the rodeo tonight.
As I write this, they're still out partying.
But how cool to have someone I love and admire who has been there, done that and survived to
have a healthy, happy family.
After yesterday, today was a good day: a day of hope.
Friday, August 17, 2012
This loooonnng day started way too early. Being the neurotic mother that I am, I woke the boy up
at 2 a.m. so he could eat a little oatmeal and drink some milk before having to fast for surgery.
The poor traumatized child cried on the way to the hospital and really let loose when we arrived.
I think he will forever hate anyone wearing blue hospital scrubs.
The key was keeping him occupied while we waited and waited.
Once again, bubbles to the rescue.
Dr. Chang is one of the four Cancer docs taking care of Keanut.
She did the Spinal Tap today... and came in for a visit before the procedure.
Kean loves Dr. Chang. Notice she is not wearing her blue scrubs as of yet. Hmmm...
This time, they let me suit up in what I like to call the garbage man jump suit-- one size fits nobody.
I got to go with him into the surgery room and hold him until the gas mask did it's magic.
The surgery room was impressive--- huge, high tech and I counted ten "blue suits"
and that was before the three doctors arrived.
It took only a little over an hour and a half before they finished putting in the permanent port,
gave him a spinal tap and the first of three doses of Chemo today.
Lucky for me, I had my secret weapon-- my dear friend Elly Moomey was there to keep me company
and keep me calm-- and then help with Kean.
When he woke up, he was as mad as a hornet and having some breathing issues. I guess he
had what they call some bronchial spasms during the surgery so had to give several doses with a nebulizer
and then another one and some meds after he was awake.
We finally made it home late afternoon where he has been nothing short of miserable.
I think his front side hurts where they put in the port and his back side hurts where they did the Spinal.
Grammy came over and held him for a while.
Here's where they put the port in. It is completely under the skin and from now on whenever he needs
Chemo, blood draws or IV meds-- a needle will be inserted into the port (after numbing cream). It goes directly
to a major vein.
The girls had a day of rest and relaxation over at my cousins-- Danny and Shera Mae's house.
If you can't tell they are soaking their feet in a bubbly tub and sipping bubbly (apple juice).
Today would have been a great day for me to have joined them!!!
I can't believe how much the little guy has gone through in just one day.
A huge thanks to Teresa Peery for making a delicious dinner for our family tonight.
If I had to do it-- it would have been cold cereal for all.
So thank you for the warm, yummy food.