Andy & Jessica

Today was another day.  Surprising, Jude’s 5th treatment was fairly on time so he got to eat/drink by about noon today, which is a record.  After his treatment, I went to my office here to get some quiet time to work.  I was on a teleweb seminar when our visitors arrived at after 5 p.m. so I didn’t see Jude’s reaction.  Andy videotaped it though so that will be fun to watch.  The cousins ran wild for hours and Jude was all sweaty.  When the Panera bread arrived at 9 p.m., Jude yelled out, “Yeah, the bread’s here!”  He then was the first person to run and grab some plastic gloves to help sorting.  He sure learned that drill fast.  I don’t think he was much help though.  Within seconds he found himself a muffin with frosting on it and asked if he could have it.  After one bite of that, a caramel roll with walnuts on top caught his attention and he had a bite of that.  Then it was a couple bites of a hard roll.  I think he takes after me by just wanting a taste of everything so I can’t really give him a hard time.  After all, it’s better to eat just eat the frosting off a muffin than to eat the entire muffin and it’s better to eat just one bite of a carmel roll than the entire caramel roll.

Jude has been collecting the cardboard cylinders from all the empty paper towel rolls and uses them to engage other children in sword fights.  He especially enjoys fighting a 10 year old sibling of a proton patient.  He was pretty wild tonight and suffered a pretty bad injury during a sword fight.  The access (needle) for his port fell out.  So, he was standing there with a long needle sticking part way in a part way out of his upper chest.  Someone needed to pull it out all the way and properly dispose of the needle and cover up the hole to prevent infection.  Thankfully, I was breastfeeding Asher at the time I witnessed the incident so I had an excuse not to render the necessary first aid (which would have made me queasy) .  Instead, I had a resident get Andy, who pulled the needle out and reminded Jude why he couldn’t play so rough.  So, Jude will have to get gassed down tomorrow so they can access the port.  He’ll go to sleep  for the treatment crabby and wake up crabby after the anesthesia wears off.

Jude will have a hard time containing his excitement tomorrow since we have surprise guests coming — Grandma and Grandpa Forbes, Aunt Katie and cousins Ivan and Jonah.  He’s going to go crazy when he sees them.  They will stay a few days.

Yesterday was quite the night.  We had heard that Jill’s House gets all the Panera Bread leftovers on Monday and Wednesday nights and tonight I got to see and taste firsthand all the deliciousness.  One of the residents here headed up the effort to sort all the amazing carbs – breads, bagels, muffins, scones, cookies, cinnamon rolls, brownies, etc.  There were enough carbs to overflow 2 bathtubs.  I have to confess that I wasn’t much help with the sorting process.  I was more into sampling.  I really had to try everything so I knew what I wanted to pick for breakfast today.  But, I simply couldn’t decide.  For those of you who know me well, you know that this is a dream come true for me.  I’m cheaper than cheap and I love free stuff.  Of course I’ll be on an almost all carb diet while I’m here.  We’ll see how that works out for me. 

In other news, we have come to learn that the proton radiation machine can be counted on to be down.  In 4 treatments, only 1 was on time.  Today Jude got in for his treatment an hour late, which we are learning is pretty good.  Thankfully, he befriended a boy in the waiting room and asked him to play a game with him on the android.    That took his mind off his empty stomach.  4 down 29 to go.

Jude finished his 3rd radiation treatment today. They were running behind today (again) and he didn’t get in until noon and didn’t get to eat/drink anything until about 2 p.m. Poor guy. Other than the late start, it was pretty uneventful, which I suppose is a good thing. The boys seem to really like it here. There is a great play set outside and a fun play room. I even found some school supplies/activities in the playroom. Jude loved doing his school work in the playroom yesterday.

There are 22 brains decorated by various artists hidden around Bloomington, Indiana.  Today we hunted for some of them.  This one was right outside of the proton center. 

Andy saw the following tweet yesterday, which I thought was really cool:

Vicky  (@vickyyyf) 6/22/12 9:01 PM Dear Cancer I beat you aged 8, and today i got my PhD in cancer research. Take that.

 

While Jude, with a brain cancer history, would typically be considered the sickest kid in the room, that is not the case here.  He appears to be the healthiest young kid in this house.  Some of these families are really going through a rough time.  One family from Ukraine has a 3 year old girl who had a 3-1/2 inch brain tumor removed a year or so ago.  They paid for that first surgery by selling their apartment.  She has had another resection and is now doing radiation and chemotherapy.  She apparently has 5 tumors in her brain right now.  That does not sound good.  Another 6 year old girl had a tumor burst open in her gut region and his cancer cells everywhere.  She has lost both ovaries and is doing chemotherapy and radiation.  She was just hospitalzed today for malnutrition since she cannot keep food down.  She was Jude’s best friend here.  It’s really sad to see these young kids and nice families going through such tough times.

Jude had a 10 a.m. appointment for radiation and didn’t get in until 12:30 p.m. since the beam was down.  So, he didn’t get to eat today until 2 p.m. again after waking up from anesthesia.  Brutal.  He is doing well though.  The radiation doesn’t seem to be having any impact on him yet.  I’ve heard it can cause fatigue.  Not yet.  His hair smells a little bit like fire, but that’s all I’ve noticed.  So far, so good.   2 down 31 to go.

It’s past 1:30 a.m. here in Indiana and I haven’t slept yet.  I’ll get to that, after this.  Today was a crazy day.  Jude had to arrive for proton therapy at 11:45 a.m.  By the time we loaded him in the hot car to drive to the treatment center, he realized he hadn’t gotten anything to eat or drink all day and he got really mad about it.  We had just distracted him all day long when he asked about food or water and even ensured he didn’t run or play too hard so that he didn’t get thirsty.  He cried in the proton center’s waiting room about being hungry and thirsty and they got him right back for treatment.  He was put to sleep with gas and then poked after he was sleeping (which is the way he likes it).  While he was undergoing treatment, we learned that the actual beam time is only about 30 seconds a day (Monday through Friday).  It just takes a long time with set up (e.g., 2 X-rays to position the beam to within a millimeter of its target).  We also learned that they are doing 3 beams to minimize the impact to the healthy brain tissue on the way in.  They thought through every last detail about how to go in to minimize brain damage, even down to the detail of how to ensure Jude will have no permanent hair loss from the treatment (using the 3 beams gives a low enough dose of radiation that it will not permanently damage the hair follicles).  Of course hair loss is the least of our concerns, but I love to see how they are detail oriented since it makes me very confident in the treatment plan.  I was thrilled that the radiation oncologist says that he thinks Jude is curable .  Jude went to sleep mad from the gas and woke up really mad, which is apparently common.  He was kicking and screaming when he woke up.  Then he fell back to sleep and he slept and slept.  I got the sense he would have slept all day, but a nurse came in a told us we could take him to the car sleeping.  All our boys had fallen asleep so she helped us carry one of them to the car and we left. 

The kind staff at Jill’s House agreed to give me an empty guest room as my office so that I can have a quiet place that locks to work.  I got my office set up after the treatment today and even worked on a few projects, which is why I’m up so late.  Actually, probably the real reason why I’m up so late is major technical difficulties — the printer I got from work is not coordinating with my work laptop (they think I may need a new laptop).  I was on the phone for several hours with 3 different tech support people.  Finally, after none of them could help me, Andy saved the day and hooked up my work printer to his computer so I could print the stuff that was too difficult to digest while reading on a screen. 

Tomorrow should be a better day since my office is working somewhat and  Jude has his proton appointment at 10 a.m.   A 10 a.m. start will be less difficult for eating/drinking reasons, although I think I’ll stash some food in the bathroom to eat behind his back tomorrow morning so I don’t have to suffer with him.

Yesterday morning, on our to Indiana, we go news from our oncologist about St. Judes’s review of Jude’s tumor tissue from 2010 and 2012.  The review confirmed that radiation is warranted.  It turns out that the only factor that researchers have found that correlates with recurrence of supertentorial cortical ependymomas is invasion into the surrounding brain tissue.  Jude’s 2010 tumor showed minor invasion.  Jude’s 2012 tissue showed interface between the tumor and the brain’s white matter and nodules/projections of the tumor into the white matter.  Apparently, while tumor cells aren’t supposed to be anywhere in the brain, they are especially not supposed to be in the white matter (I guess they would be behaving better if they are only in the gray matter).  It’s still possible that the surgeon removed all the invading cells, but it’s good that we are set up to radiate with a 5-8 millimeter margin around the tumor bed to get any cells that may have been invading.

Jude is set to begin radiation this afternoon.  He hasn’t been able to eat or drink since last night.  I feel bad since the rest of us have been sneaking behind his back to get something to eat or drink and he can’t.  Poor guy.