Andy & Jessica

This evening we are expecting Andy’s parents to arrive.  Our plan was to keep it a secret, but I think Jude is totally on to us.  After all, he read the room assignment list that is posted and noted to me that “Olson Visitors” were expected.  I think the boys will be thrilled to see their Grandma and Grandpa Olson.  They will spend the weekend with us.  I’m not sure what we’ll do, but probably local stuff.

I always think Jude is so entertaining and has the cutest quotes.  Apparently someone agrees with me.  I told HopeKids about a June 2012 quote of Jude’s and it was featured in July’s HopeKids newsletter.  Jude’s quote to me was, “It’s kind of good that I got my head owie cuz’ we got HopeKids.”

HopeKids included Jude’s picture and the following description that they asked me to write after deciding to feature him:

Jude (AKA Jumping Jude) is 5 years old and full of energy.  At 3-1/2, he was diagnosed with a rare cancerous brain tumor.  The tumor was fully resected, but came back and had to be fully resected again in June 2012.  Jude was playing Xbox within hours of waking up from brain surgery and discharged within 2 days of surgery.  He takes his medical condition in stride and likes to look at the positives that have come from his diagnosis – especially HopeKids.  We love bonding as a family at events and we also enjoy meeting other families who are walking in our shoes and can provide us advice and support as we face difficult questions about the proper treatment of Jude.  We feel truly blessed to have HopeKids in our lives.

21 down, 12 to go, after today’s treatment. Tomorrow the proton center is closed for a regularly scheduled maintenance day so it was toy day today. Jude picked a $10 Target gift card and then filled the cart with all his favorite options and agonized for quite awhile about what to pick. Ultimately, he choose 2 Ninjago Lego booster packs, at $4.99 each. Given that the proton center is closed tomorrow, that extends our stay here by a day. Luckily it didn’t extend our stay a whole weekend, which would have been really irritating. I’m so thankful that Jude hasn’t missed a single day of treatment due to illness or anything. The boys have been remarkably healthy for a really long time now, which is very unusual.

I keep getting asked by other patients about we are doing tomorrow on our “day off.”  Well, it won’t be a real day off.  I’ll be working, as usual, and Andy will be taking care of the boys.  I’ve realized how lucky I am to have a job that can be done remotely (unlike some other parents here who are physical therapists, detectives, etc.) and I’ve realized how lucky I am to have an employer that agreed to let me work remotely for 7 weeks.  Pretty amazing.  It certainly makes this difficult time a lot easier when our entire family can be together.  

 

Apparently, I can’t keep track of what treatment we are on even though I’ve been doing a countdown.  Able quadruple-checking, it looks like today was actually treatment #20.   Treatment went fine today.  I’m glad we called ahead, since we learned they were running 30 minutes behind.  So we didn’t have to rush out the door.  Jude isn’t losing much more hair.  I think it is now about as bad as it’s going to get since I think all the hair that is getting hit with the proton beams has fallen out.  Really a lot of hair loss (1/4 of his head), so a lot of his brain is getting radiated, which is unfortunate.  Jude does great with the treatments.  He likes to grab the access key from the nurse to open the door leading to the treatment area, race down the hall to the treatment room, jump up on the bed himself and then request the mask to go to sleep.  He would administer his own anesthesia if they would let him.  He wants to do everything himself, except when it comes to making his own bed and cleaning up his own toys.

Another day, another treatment. Jude’s radiation oncologist here at IU says that it “doesn’t go any better than this” for his patients. He is full of hope that Jude will be cured from cancer after this treatment. I sure hope this treatment is Jude’s cure and that 5/10/20 years down the line it doesn’t come back and that Jude doesn’t get some other stupid brain cancer as a result of 2 x-rays a day for set-up and all the proton radiation. This is the best treatment available today, but it’s not perfect. Jude has now lost 1/4 of the hair on his head. The large bald spot is now looking like a chubby heart. It’s somewhat troubling to see him without hair because it now looks like something might be wrong with him. Still, his energy level hasn’t changed, which is great, since fatigue is a common side effect of radiation treatment. Maybe if it did impact him, it would make him more normal energy, rather than high energy like he is.

Yesterday at the splash pad a 7 year old boy asked Jude what his name was.  The boy couldn’t understand Jude (sometimes people think he’s saying “Dude”).  When I told Jude’s new friend that Jude’s name was Jude, the boy responded, “Jude?  That’s a weird name.”  Jude had the cutest response.  He said, “No.  It’s a unique name.  I only know one other person with the name Jude.  Maybe when you are a grown up, you can change your name to Jude.  Really!  Maybe you can.”

Jude’s treatment was fairly uneventful today which is good.  He had an 8:45 appointment, but it was running 45 minutes behind.  Still it is way better than the noon appointment running 2 hours behind to which we had grown accustomed.  Today Jude decided to get his Happy Meal of the week after treatment.  Not too surprising since it’s Monday, after all, and his first opportunity.

Jude was thrilled that today was my birthday because what’s mine is his (and, well, what’s his is his).  We stuck as closely as we could to Jude’s birthday plans for me.  We went to Sam’s Club where Jude picked out my birthday cake.  Unfortunately, Spiderman was sold out, so I got 30 equally delicious, but not as cool, sea creature cupcakes.  After Sam’s Club, we went to a nearby retailer so the boys could pick me out the presents I wanted so badly — a new choo choo and a super hero toy.  Levi picked me out a new choo choo that (surprise, surprise) he just loves.  Jude struggled so much over what super hero toy to get me (meaning him) that finally I talked him into a motorized engine that I knew Levi would also love.  After that we went to the splash pad for over 5 hours.  It was an awesome park with way more than just water to splash in and is tied , in my opinion, with several other parks as best park ever.  Our Ukrainian friends joined us there for awhile.  Jude told me later that while he was at the park he was hiding a secret — that he was missing his hair.  He told me that his Angry Birds hat wasn’t covering up all his missing hair (and some naughty boy kept stealing his hat) and that some kids asked what that white thing (large bald spot that now is looking more like the state of Louisiana than Texas) was.  He told them it was “from a brain tumor.”  He said that they then “just froze” and that they “were moving, but not talking.”  So, I take that to mean that he shut them up and that they didn’t give him a hard time about it.  I’m so thankful to be living at a place now where Jude can run around without a hat on and not feel self-conscious at all.  Most of the kids here have brain tumors so he is not alone.

Tonight I was prophylactically putting lotion of the large bald portion of Jude’s head that is getting  radiated.  Jude said, “What part of my head are you putting that on?  The part that doesn’t have any hair?”  I asked him what he meant (since I didn’t know he knew) and he said, “That rectangle there.  Why did they chop my hair off?”  I was pretty surprised since I didn’t think he had noticed since the worst of it is in the back of his head.  He went on to comment on how the zap doctor should have just zapped his brain through his hair instead of chopping off his hair to get to it.  I didn’t tell him that it was all the zapping that caused his hair to fall out, but just told him that his hair would all come back by the time he is 6.  That’s 8 months away so I think that was safe to say.

Today we spent the day at the Indiana State Fair with our new friends from Ukraine. They are the ones with a bald and beautiful 3 year old girl who has 5 cancerous brain tumors that recurred after an earlier removal in Israel. She loves boys in general and our boys adore her. It’s funny since she speaks Russian and Ukrainian and our boys speak English and German, but somehow they manage to communicate just fine. Andy got his fill of fair food and the kids got to go on rides.  Levi was terrified by a couple of the rides he went on with Jude.  Jude, on the other hand, loved every ride, which I’m thrilled about.  I always wanted a kid who wasn’t afraid of any ride so he could accompany me (Andy is a pilot for for some crazy reason doesn’t do rides). I can’t wait to take Jude to Valleyfair someday and go from one rollercoaster to the next. To my disappointment, we missed the Monster Truck Rally and the DNR catch and release fishing, which would have easily been the highlights of the fair for me. I’d put the Indiana State Fair behind the Ohio, Arizona and Minnesota State Fairs in a coolness contest.