Andy & Jessica

It was a jam-packed weekend.  On Friday night we drove to Louisville, Kentucky.  We arrived a couple hours before the hotel’s pool closed.  Jude, Levi and I went swimming (or, more accurately, I went swimming while they clung to me like newborn monkeys).  We had such a good time.  The boys especially enjoyed jumping into the pool to me.  Levi would go first and, after catching him, I would quickly attach him to my neck and then back up and then Jude would jump to me.  Levi is fearless and, after we had all gotten out of the water to get a drink, he jumped into the pool’s deep end alone.  I quickly jumped in and rescued him and he was barely phased.  Jude is now comfortable in the water but cannot swim (even though just 6 months ago he could swim 10 feet independently at swimming lessons).  I think we’ll need to get Levi  in lessons since he’s a natural and loved practicing kicking and blowing bubbles in the water.

On Saturday, we headed to the Kentucky State Fair.  The most memorable moments were an acrobatics show, a dog trick show, learning I was too young for a free mammogram (yeah!), watching Andy eat a donut burger (with 2 Krispy Kreme doughnuts for the buns) and sampling Andy’s deep fried Kool Aid (which tasted like bad doughnuts).  I also learned at the Skin Cancer booth, to my dismay, that my beloved freckles are skin damage.  So, maybe I should stop wanting a red-headed freckle-faced little girl.

After the fair, we went to Chuck E Cheese’s.  It was the boys’ first time there.  Andy and I had remembered how bad the pizza was when we were there 7 or so years ago so we were a little nervous, but thought we’d give it a shot.  It turns out, they got a new recipe and the pizza it was good, or as Andy would say, “edible.”  We got Jude 35 tokens.  The owner of the store saw Jude and stopped by our table to give Jude 7 free tokens because he has “such a good attitude” (in other words, there are some perks to being a cute boy who is 1/2 bald with a 6 inch scar on his head).   One kid told Jude some stuff including, “Your hair is missing.”  Later his friend came up to me and said, “I’m sorry for what my friend said to yours.”  Jude and Levi had a blast playing games.  We even splurged and spent $1 to let Jude go in the Ticket Blaster booth where he had to wear goggles and try to scoop up/catch as many tickets as he could in 30 seconds.  Andy and I coached him like it was a high stakes event.  We had him tuck in his t-shirt and told him to scoop them off the ground where they like to congregate and stuff them down his shirt for safe keeping.  In the end, the worker told him before he entered the booth not to scoop them off the ground and our this time obedient little boys walked out almost empty handed.

After 4 hours at Chuck E Cheese’s, Jude and Levi and I went swimming again at the hotel.  It was super fun and when we went to sleep Saturday night, it really felt like Sunday night since we’d been so busy.

Today (Sunday) we planned on just going to the Louisville Slugger factory/museum.  Since it didn’t open until noon, I suggested we do a drive by of the home of the Kentucky Derby (Churchhill Downs), which I thought was closed for the season.  I was pleasantly surprised when I learned it was indeed open.  We bought the general admission tour, which wasn’t too impressive.  I sure would have loved to see some horses race.  The boys’ favorite part was sitting on some plastic life sized horses and pretending to be jockies while playing some horse racing video game.  After the tour, Jude and I were in the gift shop and I was planning on buying Jude an argyle-pattered t-shirt with a pair of jockey goggles pressed on it and Levi a t-shirt that said “Hold Your Race Horses.”  But, after Jude used some shelves as his stairs to try to reach some toys on a top shelf and a shelf and all the t-shirts on it came crashing down, we cleaned up the mess and made a quick escape without making any purchases.   Guess he saved me some money.

Then we went to the Louisville Slugger factory/museum.  The boys loved the giant baseball glove made of limestone and taking swings in the batting cage.  We really enjoyed learning how baseball bats are made.  At the end of the tour, we were presented with 5 free mini bats and the tour guide told Jude, “no fighting with it.”  It was as if he had known Jude forever.

After touring the baseball bat factory, we walked around downtown a bit.  I realized how ridiculous I must look toting around my bunch of boys.  I had Asher in the Baby Bjorn and was pushing our sit-n-stand double stroller with Levi in the front and my backpack diaper bag on the back of the stroller and Jude was taking a break from standing on the stroller and was dancing along side me as we walked (Andy was 10 feet in front of us carrying only the camera as usual).  A guy who was pushing one of those jumbo, double wide BOB Revolution strollers actually crashed his stroller with 2 girls loaded in it while gawking at me.  He explained his crash to the people he was with by pointing at me and saying, “She is loaded down.”  Ha!  At least I got a good workout in today pushing around my bundle of boys.

Even after a fun weekend, it was great to get back to Jill’s House.  The boys had fun playing with Sofia from Ukraine and some new friends from Alabama tonight.

 

 

7 treatments left after today.  Today’s treatment went just fine.  After treatment, Jude opted for instant gratification — a Transformer decepticon from the toy shelf, rather than a $10 gift card.  Jude’s hair is looking really crazy.  He’s missing almost all of the hair from the left side of his head, right down the middle of the head.  It is tempting to shave the left side in a perfectly straight line so that the 1/2 hair look looks intentional.  But, Jude doesn’t want to lose any more hair than he has already lost.

We’ll have a busy weekend.  Tonight we are heading for Kentucky.  Andy is dragging us to yet another state fair — the Kentucky State Fair.  Then on Sunday we’ll tour the Louisville Sluggers factory where they make baseball bats.  I’m pretty excited about that.  Given that I grew up working in a factory (working for my parents for a dollar an hour until I was 16 (or so I like to say)), I love touring factories and learning how stuff gets made.  I’m sure we’ll end up taking home some baseball bats that the boys will probably use as swords.  On the bright side, we’ve met the $12,000 family out-of-pocket maximum on our health plan for this year so we all get free ER visits for the rest of the year.

Last night was such a rough night.  Levi just wouldn’t go to sleep.  Since my pampered Andy sleeps with ear plugs in, I was in charge of trying to get Levi to stop chattering and to go to bed.  Levi ended up not going to sleep until 2 a.m.   Imagine my surprise when he woke me up at 6 a.m. wanting to watch Umizoomi in German.  So, Levi and I got a whopping 4 hours of sleep last night (except I suppose I got even less since Asher got me up several times to eat in that time frame).  I look forward to getting these boys home to their own beds.

8 treatments left after today’s noon appointment.  We were all shocked that Jude got in to his noon appointment at noon.  That is a first.  So, he got to eat breakfast/lunch at 2 p.m. today after waking up from anesthesia. My strategy in helping him avoid suffering with hunger/thirst this morning was to keep him up late last night. Jude and I (and some other house guests) went to the observatory on campus for some star gazing. Jude and Andy had raved about how cool it was to see the craters on the moon and the rings of Saturn when they went a couple weeks ago so I was pretty excited. My high expectations lead to big disappointment. The object we were gazing at was rings of nebula, which apparently are gases or something coming off a star while it is dying.  Honestly, it looked like a very small smudge at the end of the telescope.  But, I didn’t want to discourage my potential little astronomer (who had asked the students leading the session why stars die) so I just talked afterwards about how cool that was that we got to see a dying star.  He expressed concern that since the sun is a star that it will die out and then the world would come to an end.  Uh…good point, little buddy.  I don’t remember how I responded to that zinger.  I then fed him a midnight snack and he was so exhausted that he requested that we go to sleep without praying and telling a funny story, but then he added that I could pray if I prayed to myself so that I didn’t disturb him.

9 treatments left after today. We’re getting so close. Everything went just fine today. Jude lost some more hair but his bald patch is holding up and his skin that is getting radiated doesn’t look damaged and isn’t sore.

Tomorrow’s treatment will be rough.  His treatment time is scheduled for noon, which means 1 or 2.  He won’t be able to eat until waking up from anesthesia at 3 or so.   I could get him up at 3:30 a.m. for an early breakfast.    Or, maybe he’d prefer that we party tonight (and go to the observatory) so he can sleep in tomorrow.

To me when I was slightly panicked for a second that I had misplaced the car keys while getting ready to go treatment this morning, but then found them right away:  “Wow.  And and I didn’t even pray for you that time.  Next time I won’t pray for you either.  I can’t give you extra help.  That would be too easy.”

1.  To me when I caught him wheeling his brothers around in a giant Sam’s Club cart and crashing into stuff:  “That’s why you should never leave me alone.  Because it only takes me a few seconds to come up with something [destructive to do].”

2.  “How hot is the sun?”  When I responded about how hot it is, he commented appropriately, “Maybe that’s why it’s so high up.”

3.  To someone in the house who overheard Levi describing in German what button he was going to pick in the elevator (“eins”/one): “We have friends in Germany.  We are experts in German.”

The big countdown begins.  10 left.  Today’s treatment went just fine.  However, when they called me back to the recovery room, I noticed that indentations from Jude’s plasticy mask (that fits tightly over his entire face/head during the treatment) were prominent all over his face (looking like a honeycomb pattern).  They said the anesthesiologist had also noticed that.  They believe it means that Jude is growing and will need to have his mask stretched.  They said that if the mask produces another honeycomb pattern all over his face tomorrow, they will stretch the mask so that Jude will not have any skin damage on his face from the tight mask.  Jude’s bald spot is now looking like a yarmulke (skull cap) that is sitting on his head crooked to the left.  Jude’s bald spot is also looking more tan that normal.  Some of the kids around here have skin that looks super sunburned from the radiation.    I’m hoping he can avoid the skin burn because the kids say that it hurts.  I keep smothering on the lotion and hope that helps prevent skin damage.

Jude is 2/3 done with treatment.  And, Jude has about 2/3 of his hair left.  A little falls out everyday.  But, he’s still doing great and has great energy, which I think is unusual.  Everyday, when I have to leave Jude’s side after his anesthesia has kicked in someone on the large team always says, “We’ll take good care of him.”  Even though I know they will, I love hearing that each day.  There is really no room for error in the job they are doing and they are doing a great job.  Today after treatment, we went to McDonald’s where Jude got his weekly Happy Meal.  Jude is still loving it here.  He has lots of friends in the house — the Ukrainian girl, the other Jude and now some new friends.  A very nice family from North Carolina with a 6 year old boy (also with brain cancer) and an almost 4 year old girl are the boys’ new friends.  Several families here have accents and sometimes Andy and I find ourselves accidentally talking with an accent — for me its usually southern and for him it’s often Russian.  We will miss these people.  Please pray for all the little fighters out there (there are lots and lots of them)!

Yesterday was a bust.  We went to a small town tourist trap in Nashville, Indiana and to a flea market.  Today, however, was a hit.  We went to a local attraction called “Jump-N-Joeys.”  It was awesome.  Admission was free for everyone but Jude and Levi and they only cost $7 each.  The place was full of giant jumpy castles and obstacle courses.  The boys had a blast.  Andy even splurged on $20 of tokens to play all sorts of games that won Jude over 1,000 points that he redeemed for a hand-sized plush Angry Bird.  All that jumping really wore Jude out.  We got back to Jill’s House and I went to work making Jude some dinner.  As it was sitting there getting cold, I realized I hadn’t seen him for awhile.  I got some people to help me look for him.  Andy found him sleeping on the couch in the great room at Jill’s House.