Andy & Jessica

Jude

Sometimes I wish Jude wasn’t so smart.  When I asked him to help me clean up the mess he and his brothers made in the play room downstairs he refused initially and pointed out the sign on the door that say, “Parents/Guardians are responsible for cleaning up after their children.”  He’s too smart for my own good.

Levi

Levi is 2-1/2.  It’s hard to tell how smart Levi is since he’s English is coming along, but very slowly.  He now says some sentences, but often still combines English and German.  The other day Andy had to ask me what a “Hut” is since Levi was talking about “Daddy’s Hut” (meaning Daddy’s hat).  Levi loves Cars, choo choos, orange juice, “Mommy juice” (sugar free orange drink), pop (which he sometimes gets sips of if it is caffeine free) and eating just the bun from a hamburger.  Levi gets admirers (both adults and kids) very quickly.  He loves to just go up to someone and poke them and yell “Ha!” and run away and then a friendship is born.

Asher

Asher is growing up so fast.  He’ll be a year old at the end of the month.   He’s working on his 6th tooth and gets around mostly by walking these days.  I could have sworn Asher said “hi” today and the other day.  He’s a fun kid.  Mostly happy.

Today marks Jude’s 17th of 33 treatments, so we are over 1/2 way done with his radiation treatment.  His hair is falling out like crazy.  I can now place my entire hand in his bald spot at the back of his head.  It is very crazy looking bald spot — it actually looks exactly like the state of Texas.  Andy thinks we should just shave Jude’s entire head.  But, I think that would be traumatic for him and will not go along with that.  Jude doesn’t know yet about the missing hair.  Thankfully, we don’t have to worry about what he looks like around Jill’s House or the treatment center since he still has more hair than many of the kids.  I just feel self-conscious in public.  Last night in the park, I insisted that he keep his hat on since I don’t want other kids asking him where his hair is or teasing him.  

Today was toy day at the proton radiation treatment center and Jude opted for a $10 Target gift card instead of a toy from the toy shelf (which we never knew was an option until today).  I guess they rightly pegged Jude as an instant gratification type and didn’t offer the gift card until today.  He really agonized at Target about what to buy and finally opted for a Ninjago Lego set for $7.  He’s planning to get another $10 gift card next Friday from the treatment center and then use the $13 to buy something really cool since most of the things he really wanted were $12 and out of his budget. 

Tomorrow we are planning on going to yet another state fair — this time the Indiana State Fair in Indianapolis.

Just when I get bummed because one of Jude’s favorite friends here leaves, another new friend arrives.  Jude’s latest friend is Jude, a 9 year old boy with an inoperable brain tumor.  My Jude was really surprised to learn that the new boy was named Jude and said, “I thought I was the only person in the world whose name was Jude.”  Jude and Levi love Jude and the older Jude has had my Jude on the floor in a heap laughing. 

After dinner tonight we talked Andy into going with us to Cascades Park, that nearby park that that boys and I just love.  It was really funny.  We hadn’t been there for more than 5 seconds when Andy announced, “I found my favorite thing here.”  I asked, “What?,” even though I knew.  “The bench,” he announced with a smile.  So, the boys and I played while Andy got up to speed on his Twitter feed.  Then after playing for awhile, Andy joined us on an adventure walk in the woods.  Jude wanted to revisit the cannon from a World War (a storm drain pipe) and the sunken ship (metal bridge structure).  This time my brave little adventurer wasn’t afraid of lions, tigers or pirates in the woods of Indiana.

After the park, Jude decided he wanted to plan my birthday, which is coming up in a few days.   He wrote a list: (1) Chuck E Cheese’s (he’s never been there before since Andy and I had our 2nd worst pizza there ever and, as Andy likes to say, he’d rather “eat a rice cake with ketchup and cheese on it” than pizza from Chuck E Cheese’s); (2) splash pad; (3) Spider Man cake; (4) choo choo (Levi’s suggestion); (5) super hero toys; (6) party guests; and (7) Wonder Lab science museum.  Sounds like lots of fun.  I realized that I know I”m getting old when Jude asks if we can celebrate my birthday tomorrow (which is 2 days early) and I respond, “No. I don’t want to celebrate any earlier than I have to.” I may not be 25 anymore, but I don’t feel a day older than that.

As of tomorrow, we’ll be past the halfway point in Jude’s radiation treatment.  His hair is really falling out now and he has a large bald spot on the back crown area of his head.  His head l0oks like that of an old man.  The proton center told us early on about this hair salon in town that offers free hair cuts to pediatric patients of the proton center.  I was thinking I’d sign Jude up for a free hair cut.  But, now it appears that he’ll have no hair to cut.

Poor Jude is so accustomed to his port access falling off mid-week that he just asked us, “Is tomorrow the day my port falls out?”  We said something like, “Yes, your port access usually falls out on Thursday and they take it on Friday.”  Then, as if he was trying to fulfill a prophecy, Jude decided to join Levi in the bath (which he isn’t supposed to do mid-week).  I coached him about not getting his port access wet, but he couldn’t help himself.  He was soon dumping cups of water on top of his head and the water ran over his shoulder where the port is.  The bandage is now barely clinging on and I know that port access needle could pop out at any time.  Poor Jude is scared and so am I.  Hope it can last until tomorrow.

They woke Jude up again after treatment #15 today, which was a big bummer since he could have used some more sleep. I had to carry him out of there since he was still too tired to walk. I noticed when I picked him up from the bed that he left a small pile of hair behind. Then he was snuggling his head into mine and soon I had a mouth full of his hair. We suspected this would be coming. Thankfully, the hair loss and thinning is in the back of his head so Jude won’t even notice it. He’s oblivious to his large scar (and missing hair) from the prior 2 surgeries, which is the way I want it for now. Supposedly Jude’s hair will grow back. The radiation oncologist here said that his Ph. D. team came to him with the radiation treatment plan before Jude started treatment and he wouldn’t sign off on it because 2 of the 3 proton beams were overlapping in their entry points, which would have caused large amounts of permanent hair loss. He gave them another 4 hours of work to re-do the treatment plan in a way that would not cause the beams to overlap (but still be equally effective at radiating the tumor bed area and avoiding critical brain areas). He told the team that Jude was going to be cured and that he wanted him to be a “handsome dude.” That gave the Ph.Ds something fun to think about when they had to go back to the drawing board.  That would be perfect — a cured Jude who is a handsome dude.

 

Time is flying and soon it seems we’ll be to the halfway point in Jude’s radiation treatment.  He’s doing great.  There are still no signs of side effects from the treatment.  He’s just as fun and energetic as normal.  He is not missing any hair.  It will be awesome if he can get through this with no visable side effects.  We have him scheduled for a neuropsychological examination where they test cognitive abilities when we return, but haven’t noticed anything.   I still find myself surprised when I have to fill out some medical form for Jude and need to check boxes for cancer, tumors, seizures, etc.  He just doesn’t strike me as a kid who is sick at all.  I hope that never changes.

Jude and Levi gave me a little scare tonight by disappearing.  This is a 14,000 square foot house and it’s hard to keep track of them sometimes.  We had talked about how we were going to go outside to go for a walk or bike ride, but then as I was getting Asher ready to go, Jude and Levi disappeared.  I couldn’t find them anywhere in the house and then spotted them outside through a window.  When I got out there, they had already crossed a street that was near a woods.  When I asked Jude what he was doing (with Levi trailing behind him), he said, “But we looked both ways!”  Jude is smart, but not always too wise.

Jude had his 13th treatment this morning.  I went with him and Andy, Levi and Asher stayed behind.  That is our routine now for every day except Thursdays, which is the day that we meet with the radiation oncologist and Andy likes to be  there for that.  Going with Jude alone allows me to the most work done while I wait for Jude to be treated and to wake from anesthesia.  Just before we left for treatment today, Jude managed to take his shoes off and lose them.  We looked everywhere and couldn’t find them so I just had to carry him to the car, into the treatment center and back out to the car and into Jill’s House after treatment.  The little prince likes it when I carry him.  Hopefully they turn up somewhere.  Then as soon as Jude got into the car, he took a sip of some orange pop that he’d left in the car from last night.  I stopped him before he did too much damage.  Thankfully the tiny sip didn’t cause him any problems with the anesthesia today, but maybe would have delayed his treatment if I had disclosed the little sip.  After they gased him to sleep today, they accessed his port and left it accessed.  We’ll see if Jude can manage to make it an entire week without popping it out.  That’ll be a first.

Jude finished his final treatment for the week today.  Treatment was only running 45 minutes behind, which was great, although not great that we called before we left and they said they were running on time.  Jude got to pick out a toy from the toy shelf before treatment started — a Lego Hero Factory guy, for ages 6-16.  He assembled most of it himself before treatment started.  They woke him up right after treatment and he came out screaming and swinging.  (Which is apparently not unusual for a kid who was gassed to sleep completely since he didn’t have a port access.)  Then the whole way home he yelled at me for not assembling the rest of his Lego Hero Factory guy like he apparently told me to do.  We’re heading to Columbus, Ohio for the weekend to go to the state fair and to the zoo.  Should be a fun weekend for the boys.