Andy & Jessica

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.

Jumping Jude

He picked out a pair of tie shoes yesterday (instead of the usual velcro).  Before he chose them, he ran in them in the store to see how fast he was.  He looks like such a big boy while wearing them.  Now he just has to learn how to tie them. 

Leaping Levi

His speech is exploding.  As of yesterday, he started saying his own name.  Yesterday he said, “Levi too” instead of his usual, “I too.”  So cute!  I find that when comes up with the words to ask for something, I have the hardest time not giving into his cute requests to watch Cars 2, drink pop or eat Panera cake or cookies. 

Amazing Asher (aka Acrobatic Asher, Bouncing Bobo, Mr. Grabby (he likes to grab everything))

His 6 tooth has almost busted through and he is through with crawling.  Only walking now.  He loves waving at people.  He also has a way to say “hand it over” when we are eating something.  He makes a fist and then extends his fingers out and in.  We’ve even seen him take his food out of his mouth and do his ‘hand it over to me’ gesture asking for some of our big people food.  I like to tell him, “You couldn’t be any cuter if you tried,” which is so true.