Halloween 2009

Hope my title didn't spook anyone out too much! Well here they are in all their 2009Halloween glory. Don't worry Jax is still with us--but with this Mom, no costume, no picture. Sammi is with her friend Khrystal they had a "Partaay" to go to tonight, thank you very much preteen party thrower!! Better you than me!

Blood Counts for Round 2

Here you go you blood count junkies (I may be the only one---hmmm)
HCT this time-33.9 *last time-36.8 *normal range-31-48 PLT this time-252 *last time 448 *normal range-150-500 WBC this time-4.9 *last time-6.2 *normal range-5.0-12.0 ANC this time-2,600 *last time-3,447 *normal range-over 1,000.
So to sum up, a little low, but not bad--if he follow the same trend as Chemo Round 1next weeks will be lower still. Amazing how familiarity breeds comfort, but things don't seem as scary to me this time because I know his numbers eventually pull up in the 3rd week, or so the history of one other time tells us!! Happy halloween everyone--I hope tonight finds me posting about a great one with non-grumpy little kids and non-tired parents!!

Thank you carpet fairies!

Isn't it lovely, isn't it beautiful?! We could do carpet angels all day long, we love it!! So THANK YOU anonymous carpet fairies who made this home more comfy, and much more clean. If you are ever bored do not, I repeat do not go to the American Cancer Society, (caring for children with cancer) website and look up how to clean a home when someone in it has a suppressed immune system, you don't want the pressure. Have you bleached your, EVERYTHING today??!!

Hospital fieldtrip

This morning after waking up to the fact that we really did lose to Connell last night,(sob)we loaded up the kids, minus Sammi(she had a "previous engagement") and headed back over the mountain to Seattle Children's Hospital for Jackson's final Chemo of round 2--Chemo 8 to be exact. He is doing so well,(please knock on wood when you read that) he is very tired but so far no mouth sores, or nausea, or eye trouble. I'm hoping we have found the magic medicine course, start the mouth and eye meds 3 days before Chemo--we will definitely try that again next month. Right now he takes DDAVP twice a day, HGH shots once a day, Swish and swallow 4 times a day, Zofran every 8 hours, Colace twice a day, and two diffent eye drops , two drops of both meds in each eye twice a day. Oh--and Lupron shots every 28 days and Chemo infusions 4 days every 28 days. Oh---and Bactrim DS twice a day on Mondays and Tuesdays---please call me Monday's and Tuesday's in the AM to remind me of that--I couldn't sleep last night worrying I would forget that new med. I even got up and wrote it on the fridge calendar, and that should have solved that worry-- but it didn't. I don't list these meds for sympathy, I know kiddos who are on more, but I just find it AMAZING--all we can do to heal, and to heal the effects of the medicines we need that cause effects, which in turn need to be remedied. Also I decided that I wanted this down for us to read about in the future.
Anyways, I digress --we took the 3 youngest with us and Jax, hit Husky football traffic, ugh, and despite the traffic it was great. Saturdays are very quiet at the hospital, and when we went in Jax was the only kid in infusion getting Chemo. The Nurses pulled out a port for the little kids to handle and examine--they had the opportunity to watch him get accessed (Sierra was the only one who actually watched the needle go in--the others must be related to their Dad--who was also pointedly not watching)and they loved the "nutrition" station where there were goldfish crackers and drinks(technically only for the patients, but the nurses decided Jax needed them to be fed and hydrated too!)!! What can I say, Chemo looks O.K. to them--except for the needle-- Jax got lots of sympathy from them over that. After Chemo we took them to lunch at Red Robin and then to see "Astro Boy", Jax slept through most of the movie, not a reflection on the movie, more of a reflection on the Cytarabine! I also don't get mother of the year (and I'm pretty sure I was in the running)after all---because I forgot the Camera. They looked so cute intensely watching Jackson and the nurse grrrrr. I did scan in pictures of a port (nowadays they are plastic, although Jackson's first port at age 4 was just like that!) please know, Brenda, that I scanned the pictures from the port book the nurse gave the kids, and I did not take a picture of a picture---JUST FOR YOU!

What does Chemo look like....

It looks pretty cozy to me!

And after a nice nap at Chemo we go back to the hotel so Jax can:

Here are the promised count posts, sorry they are late, we had hotel Internet issues last night:
HCT: 36.8 last time 36.4 normal 31-48 PLT 448,000 last time 629,000 normal 150,000-500,000 WBC 6.2 last time 2.9 normal 5-12 ANC 3,447 last time 1,305 normal over 1,000.
We look good so far, and no mouth sores yet. This I attribute to all your prayers, every day someone new and sometimes surprising tells me they are praying for Jackson. I love faith, and family, and friendship, and prayer.
Interesting side note, when we got back to the hotel yesterday after Chemo we noticed a group setting up for a convention, and some interesting(to put it extremely mildly) looking folk around. That's right people, a convention for burlesque dancers (I'm sorry performers) at our hotel!! We heard and saw some stuff that I won't subject you to. In fact I almost feel like I best be making an appointment to see my Bishop after staying at that hotel!! A note was under our door this morning with a list of their "activities" for the day, oh and if anyone lost a diamond nipple ring check in with Candy, you know the guy who taught the fan class last night!!

Back in the saddle again....

Round 2 infusion 5 is complete. Jax did great, I will post his counts tomorrow. They are going to start him on a maintenence does of Bactrium which is an antibiotic that, in his case, is to hopefully prevent a particularly orniery pnemonia that he is most at risk for because of his low WBC. Thanks for all the help and prayers, they are working!!

Decorating Tips from Becky....

I am going for a new minimilistic feel in our home, more Fung Hey or Chi Wheee or whatever the hip cool terms are, do you like it?






The dining room is a little more eclectic, in fact my Mother thinks it looks like this because we are replacing the 30 year old carpet that is upstairs (not exagerating it is disgusting) but really it's that I just never get around to picking up in the dining room.

The kids have had a blast eating on the living room floor for 3 weeks. What go back and read that again we have been living like this for ---- 3 WEEKS! The first order of carpet came damaged, or so they say, I think they just thought it was funny to make a woman with 5 kids live this way. However on the upside when Carter kicked over his entire bowl of chili at dinner, no one batted an eye!

Counts are rising!

Jackson's counts on Friday (the 16th) looked better here is a run down:
HCT went from 35.8 to 36.4 in the normal range
PLT went from 376,000 to 629,000 now way ABOVE the normal range but the nurse assured me that when Platelets get low a sign of healthy bone marrow is that it overproduces and they sometimes get to high, they should settle back in the normal range soon.
WBC went from 2.0 to 2.9 normal is 5.0 to 12.0
ANC went from 800 to 1305 normal is 1800 to 7500

Thanks for the prayers. Chemo is next week---(sigh) Wednesday through Saturday.

In 313 days I suspect I will be very lonely....

Because in approximately 313 days Carter will start Kindergarten. This realization hit me today when he was once again my "backseat buddy" in the GT(minivan). He really unloads every thought he has on me during the day, and he especially knows he has my ear when we are in the GT together. Here are snippets of today's conversation:
"Mom did you know dat dare are Aliens?" Oh, really Carter, how do you know? "Tuz I sawed it on duh TV, and Mom do you know any stuff dats real dat people sink its not real life?" Ummmmm, ok how about Dinosaurs they were real once Carter. "(laughs)Uh no dare not Mom, I sawed dem on TV and dare tartoons and tartoons aren't real". OK Carter. "Ummmm Mom, dress(guess) what?" What Carter---"hot lava tould till you Mom". Yep that's right Carter hot lava could kill me, it could kill you too Buddy. "Nu Uh Mom tuz I don't eber touch hot lava". (Side note, do I run around NEARLY killing myself with hot lava??) "Ummm Mom dress what, you said dat I tould buy sumpin today", No Carter I did not say you could buy something today. "Ummm Mom tan I buy sumpin today?"

All this was from our house to the grocery store about a minute away---and it goes on and on. I will be so out of the alien, hot lava, dinosaurs myth loop when Carter goes to school next year and shares his knowledge with someone other than me. I'm going to miss my "lessons". Really I will.


My Buddy Carter is also very into his new breakfast of "champions"?? Eggo's with ketchup---gag! I must say though he finally is finishing his waffle, and he loves the gross out reaction he gets from the rest of us. He also talked his Mom into buying this $3.00 spider man Halloween bucket for him this week, his Dad was not happy with his Mom--something about already owning many Halloween buckets or whatever. Anyway, since Monday he has carried this with him non-stop, and if you are missing anything, TV remote, cell phone, paper you set down for a second, might I suggest you check Spidey's head. How can that not be worth $3.00?? Husbands can be so unreasonable sometimes!

HIghs and Lows

So what do you want first, the highs or the lows? Ha ha just kidding you don't get to choose, I'm writing this baby. Lets' get the lows out of the way and end on a HIGH note.
Low: Jackson's White blood count and absolute neutrophil count. In fact his ANC fell from 1643 to 800 this time. Yikers, anything below 500 keeps him home from school and crowds (ie: church, games, stores)
Here is the run down: HCT last time it was 33.7 this time it was 35.8 up is good! PLT last time it was 128,000 this time it is 376,000 very good. WBC last time 3.1 this time 2.0 bad. ANC last time 1643 this time 800,very bad. So ya got your good and ya got your not so good. They have decided not take any action, other than another blood draw this Friday. We did call the school to have them remind the teachers to wipe down desks, and keep sick kids as far across the room as possible. Not much else we can do except pray his white blood cell count and ANC count go up.



Now for the Highs: Soccer is over!!!!! OOPS, I meant to say Sierra and Zoe just finished a lovely soccer season! They had such nice coaches with John Klefbeck and Craig Gilbert, thank you guys. To my eternal shame the only week I remember the camera for soccer was the game Zoe was sick---so I took a picture of her soccer picture, didn't work out. But as we say in preschool, you get what you get and you don't throw a fit. Works for which color chair you get and lots of other things in life!! Sammi's 7th grade volleyball team is getting better and better. In fact last week they won all three matches against Othello!! If you haven't watched 7th grade volleyball lately may I suggest you catch a game? The girls are so great, self-concsious one second and so intense the next. And everyone cheers when any "volleying" occurs! I love going to her games, she really is a great player.

Today was another one of those days where four phone calls to nurses and doctors made me realize how much I took the "normal" days for granted. And I know better, because I have experienced this before! I long for a day where I am not worrying over blood counts, H1N1 shots, Chemo arrangements, hotel accommodations, insurance stuff, and guilt over things I am not doing because I am doing those other things. I am getting a little negative, which was not my intention. What I really just want to express, to myself, and anyone else who needs to hear, be grateful for every day, days that are mundane and full of housework, and caring for your family are a huge blessing. Days when we have to deal with harder things, and more complicated problems, are also a blessing and I am going to remember that also. Struggling through this next 12 to 18 months is wonderful, amazing, and heaven sent. Why? Because, I get the chance to help my sick child get well hopefully, and some Mothers don't get that blessing.

Bummer Blood Counts

Jackson's first set of Labs since Chemo came back low. I was completely undone by the results for an hour or two---Michael can verify my undoneness. But as I was literally picking up my cell phone and scrolling down to the Seattle Children's Hospital number the phone rang and it was the charge nurse from Oncology to go over his Lab results with me. I was sobbing and she was so nice. Telling me how I don't need to panic, she asked how Jax was and I said he acts fine, not tired, eats normally, and she said Becky what does that tell you, it tells you he is tolerating things just fine. She also said the counts didn't alarm her and that he would be needing another blood draw this Friday and that we will see then if they are heading North or South. I wonder if nurses have a word for Mom's like me on days like that? As teachers we used to refer to some Mom's as Helicopter Mom's, meaning it was never little Jonnie's fault, Jonnie would never not finish an assignment or pull Sally's pigtails, or do anything that was in the least incorrect. They were "helicopters" because they were constantly hovering never letting their child be the least bit responsible for anything. So what do nurses call Crazy Mom's?!
Here is a rundown of the counts we are watching:

The first number listed is the Normal range then the Counts on 9-23-09 and lastly the Counts on 10-05-09
HCT 31-48% 37.5% 33.7% PLT 150K-500K 316 128 WBC 5-12 5.2 3.1 ANC Over 1,000 2803 1643

I guess I just was surprised and disappointed to see his counts take such a hit after the first round of four treatments, I thought we would have a few months before we had to worry about that. But what do I know?! Not enough apparently. I still am worried though, regardless of what the nurse said, he certainly can't drop like that every time.
Oh, here is a key:
HCT=hematocrit red blood cells that carry oxygen to the body, give color to the skin, and energy to the body
PLT=platelets prevent bleeding and help the blood to clot
WBC=white blood cells fight infection
ANC=absolute neutrophil count Type of WBC that is the first to respond to potentially fatal bacterial infections
Oh--if any of you now how to make graphs or charts, or even color code on blog posts, HELP it took me forever to do the numbers, I had them all lined up with bright shiny faces and every time I'd publish, they would act like crazy people!

Pictures from Children's Hospital to You....

One down, 47 to 71 more to go.....

Thanks Aunt DeeAnn, I'd like to tell you he was doing his homework here, but I'm pretty sure he found a website with racing games. Sigh.....how is he going to support me in my old age with those skills?

Do we look like Doctors or fools with coughs? Don't answer that.

Do not put this on your "must read" list, it's not that good.

I'm hoping he is dreaming of football, in reality he is probably just hoping that this is all just a bad dream. He slept most of Tuesday, except when the pain was too bad he would wake up for some meds.

Can we leave yet?

All tagadermed up and no where to go.

Back from surgery, couldn't have been happier to see this boy.

Modeling the latest in hospital garb.