so tired

Why is it that, just when we finish the every-8-hour IV antibiotic (meaning I don't have to stay up or wake up at midnight) and I can finally sleep through the night, that the same very night we are done, the baby's steroid treatment decides it's time to be starving not just during the day but ALL NIGHT LONG now??!!

The baby woke up at 3am (waking up Josh, Lilly, and me) and screamed for an hour, even with food/drink, then again at 6am (waking everyone again) and screamed for 3 hours this time. It's not a pain scream, but an angry "roid rage" scream, where he's starving and wants everything, but nothing. Sigh...

Here's Josh and Lilly at the park. I think they were chasing Josh's foxtail ball. It's like a soft baseball with a fabric tail that's about 3 feet long. You throw it and the catcher gets points for which part of the tail they catch it on. It was perfect for Josh for Christmas, but he learned the hard way that we shouldn't throw things with tails (kind of like a kite) near tall trees.

Below is Lilly around the maze. Josh and Lilly played tag through the maze a lot.

It's dinnertime!

It was literally impossible for me to make dinner for myself before Josh and Lilly got here. Now that they're here, we still end up throwing food away that we haven't finished. I cut the recipes in half, but there's still excess, and we can't really save leftovers.

I mean, I probably could find room in our tiny refrigerator for leftovers, but I don't often eat them, and neither do Josh and Lilly. They'd rather eat Top Ramen with veggies for lunch or a sandwich. And, we definitely can't feed the baby leftovers.

Did you know that in the binder of instructions on "how to care for our child with cancer," there are pages and pages that explain what foods we cannot buy or use for the baby. Organic, bulk, unpasteurized, etc. The reasoning is that a child who is fighting cancer is more susceptible to foodborne illnesses and related sickness, and that child does not have adequate strength to fight those illnesses. So, we don't share boxes of food with others here, we don't share dinner with other families, and we don't take food that has been opened and someone else has used. I think it's worth the cost of some wasted food to not risk illness for the baby. Makes cleanup simpler too.

It's just so dang hard to downsize when I'm used to cooking for 8!

(today when we walked by the store, there were a few more Volvos there. I'll have to get off that kick and just get a grip)

automotive check-in

Josh, Lilly, the baby, and I spent some great time outside today. There's an awesome trail behind our building that has several outlets. We followed that to a cool park today.

The trail goes right between our building and the fancy Volvo-attending grocery store next door. I looked at the parking lot to see how many Volvos were there today and was shocked to see none (although one was driving down the street). The cars I saw this time were: a few Audis, BMWs, a few higher-end Toyotas, and a nice Lexus. Last night we went to Safeway and there weren't any of those cars there...

Different volunteer organizations or families come a few times each week to make dinner for families here. They've all been good so far, but tonight was SO good! Even the baby ate some! Chemo changes tastes and can make the mouth and jaw hurt, so the baby has really only been eating baby food from jars, plus applesauce. So, it's been a great night :)

My family is together for a few hours!!

Yesterday, we went to the clinic (as outpatients, yay!!) and found that the treatment plan for the slow-responding leukemia has a treatment that takes 6 hours to infuse. This meant that, instead of being in the clinic for 2 hours, we were there for 8, and I didn't get to take the baby and go relax at my mother-in-law's house. :(


The nurses were great, making sure that we had everything we needed (because who packs for 8 hours of entertainment for a baby when only 2 hours are expected?!) and they felt great pity for us. The pity was because yesterday was so long, but we also knew we'd have to come back today for another 6-hour treatment.


Even though we had only a few hours together, Andy still came over, driving 3 hours to get here, and he has to leave this afternoon since he's working tomorrow. Those few hours last night were bliss, even though I was exhausted.


So, the baby has a port. A port is kind of like a semi-permanent IV line that goes just about directly to the heart. With the port, treatments and IVs are much easier to access the patient than trying to poke them each time for an IV. Because the port is so close to the heart, we have to be super, extra, incredibly careful about making sure that the site is clean and covered well when it is accessed (ready for an IV, which it has to be until next week since I'm doing the IV antibiotics).


Anyway, I brought the baby in for labwork yesterday morning (remember the visit that was supposed to be 2 hours??) and asked the nurse why there was a blister-like thing on the skin right near the port. Blisters would not be good. The nurse lifted up the baby's shirt just a little more and said, "Isn't that the baby's nipple?" She sounded kind of confused, but we both laughed and agreed that I'm not getting enough rest. Next week will be better when the antibiotics are done...and now I'll remember where the nipples are located. :)


Back to Christmas, we were blessed by so many with acts of service and gifts. Everyone was truly spoiled. Thank you. I really was not able to go out and buy gifts and nothing online looked good enough for me to buy. Although good enough wouldn't be the right term. I just didn't have the energy to shop much online either.

Oh, and there is now an officially bald head in our family. :) Wish I could post pictures with the smiling face that goes with the fearless, hairless head.

The next post will be of all the Christmas pictures in our room.

Merry Christmas!

Christmas pictures

This was the only reminder of Christmas I was able to find at the hospital.

You know, looking back now, I probably could have bought some nice things in the gift shop, but I couldn't ever leave the baby because the baby had a taste for the IV.

Some of the presents all ready to be discovered (in our room).

Daniel and his Killer Bunnies game.

One of the children gave Kelly a present in the Wii box.

Daniel saw the box and thought we got her a Wii for herself.

He was so cranky, until we explained that he should look at what was inside. ;)

Maggie and Lilly with a target practice and awesome monkey slippers.

Josh with his ball that has a tail.

Maggie with a new Jolly Rancher shirt and Lilly with a craft package.

Andy with some of his new music and a new Battleship game.

Lilly loving soda. At the house we're staying, there are soda machines with Coca-Cola products for only a quarter! The children discovered this last night (I didn't even say anything), and they all wanted to buy a bunch of pop. I only let them buy one for now.

Kelly is holding just a FEW of the books our elementary school sent for us to read and enjoy and learn from.

The aftermath. There was so much recycling, we filled up two huge trash bags.

When they all arrived, the children sat on the beds, glued to Disney Channel. After opening presents, they did more productive activities.

shopping in volvos (and lots of other stuff in parentheses)

Once the adoption is final (months away still), we can update with the baby's name and pictures on the blog. Tomorrow or the next day, the baby won't have hair. There's a huge patch of no hair on the back, and the rest itches, so we get to have it cut (shaved) tomorrow or Saturday.

A few years ago in my bike class, the instructor (bald man) was joking with another bald man in the class about hair products and how they're a waste of money. Which got me to thinking...do bald people use soap on their head, or shampoo, or anything?! So, I asked Chris (instructor), but I don't remember what he said he does. I think we'll be using baby wash.

Today, the baby and I got to take a good walk outside!! There's a great trail just around the building we live in, plus there is an all-out glitzy grocery store next to that. To get some healthier food than the vending machine food I've been living on (hospital living), we went to the store.

First thing I noticed was that you had to have a new Volvo or Mercedes to shop there. I'm not kidding, when we first walked into the parking lot, there were at least 9 or 10 Volvos parked in various places in the first two rows. Plus, I think the store had some valet-type employees out front. At least it looked like the guys who do valet at the hospital. Do you hear my inner country hick exposing itself again?!

Oh well, I was ecstatic to buy ingredients for stir-fry! And then I was dreaming about the different meals I can make when I have more than just myself to cook for (baby only likes baby food and Fritos). Tacos, Beef Nacho Casserole, Enchiladas, etc. And, to make it even better, the prices weren't way too outrageous, AND they had real dairy milk in the dairy jars (with cream at the top)!!

The only thing I didn't like about the store (besides the over-abundance of alcohol for sale) was the mass quantities of smelly gourmet cheeses. I wanted to vomit (emesis, in hospital terms) for the first half of the store with the cheese smell mixed with their gourmet seafood. Gag.

Yeah, the medications (steroids are a form of chemotherapy) have certain side-effects. Some include nausea, increased appetite (creating a VERY round belly and face), "roid rage," and changed tastes for food. The baby has had most of these, although I'm not sure about the nausea yet. The baby does not like most of the previously loved baby foods, but it liking new ones. The Gerber lasagna meal is still hugely popular, and the spicy chili Fritos are a hit. It is common to really like salty or tangy or otherwise strongly flavored foods with these medications.

Ok, I'll stop rambling on here and go read my book. It's weird to have such simple focus on each part of the day: medication times, eating, doctor or therapy appointment, and the daily chore (to live in this place). Back home, we were running around town 24/7, it seemed like.

doctors actually call

At home, our pediatrician would call periodically, to return the call when I left voicemail for his nurse. This was great.

Tonight, the specialist assigned to our baby called, and it wasn't good. The prognosis is still the same, but the baby will need more intensive and 2 months longer treatment. That means we'll be here for 8 months.

Merry Christmas to everyone.