Andy & Jessica

I feel incredibly anxious as the commencement date of radiation is rapidly approaching.  I feel like I’d rather endure 100 brain surgeries than this radiation treatment.  The 3 radiation doctors have been all over the map about potential side effects and I hate that this treatment is ineffective 30% of the time against the type of cancer Jude has been battling.  I don’t want to go through with this!

To me when I was asking him how we are “going to get out of” radiation:

“I don’t think we’re going to get out of it. But, we’re going to get through it.”

For those of you who are praying for little Jude, please pray that we get good news from St. Judes regarding the tumor’s biology. If we end up feeling like we should radiate, the brain radiation parade of horribles is quite long — secondary brain tumors, stroke, hearing loss, vision loss, cognitive problems, seizures, attention problems, etc. Please pray that God would protect Jude from any side effects of the radiation and that the tumor would go away for good (there is statistically a 30% chance the same cancer will come back even after radiation). It’s just amazing to me how well Jude has done with 2 brain surgeries. As far as we know, he has suffered no neurological or other side effects as a result of 2 cancerous brain tumors and 2 brain surgeries. That is amazing as have been his recoveries after both surgeries.  We have God to praise for this.

Why is my shadow following me everywhere? That’s scary.

Asher, at only 10 months old, is already following in the shoes of his Daddy and big brothers in being a total techie.  Asher threw his first temper tantrum today when Levi wasn’t sharing the iPad good enough with him.  Pretty crazy.

A little surgery to place a port in his chest hasn’t slowed Jude down one bit, even though it is supposed to have.  He is supposed to be playing no sports, doing no rough housing, etc.  That is really too much to ask of our little Jude.  Just hours after being released from the hospital, we spent the evening at Edinborough, a huge indoor play place.  Jude had so much fun running, climbing and sliding.  I hope he didn’t pop any stitches out.  Today he spent quite a bit of time playing outside with his brothers and neighbor friends and even ran at his top speed, which he calls, “super speed double weed.”  After having run at super speed double weed, Jude will often ask me if he looked like a blur.  I did notice, however, that he played left handed during our light saber fight this morning.  So, although he hasn’t complained one bit, I bet his upper right chest is sore from the port placement.  I put a sticker on his shirt on top of where his owie is since I was having a hard time remembering to be careful when handling him.  I feel sad that he got that port because it is a huge sign that many pokes are coming his way.  I still would love to get out of radiation, but know I shouldn’t get my hopes up.  I do hope that St. Judes gets back to us soon, ideally before we leave next week.

In addition to running at super speed double weed, Jude loves picking out apps at the iPad app store.  He convinced me today to let him get a free Ninjago video app.  After watching it for awhile, I told him it was nap time.  He said while reluctantly handing over the iPad, “Well, the 2 good things are — 1) I got a new app; and 2) it is in English.”  I then said that wasn’t a good thing that it was in English since he already knows his English and needs to work on his German.  He said, “I’ve been alive already for 5 years and I STILL don’t know all the English words.  I need to work on my English.”

I find myself feeling disappointed and out-of-luck as we get closer and closer to the time that radiation will begin and I can’t find an out.  Andy is now 95/5 in favor of radiation.  My only hope is that St. Judes will come forth with something that indicates based on the DNA they extract from the 2012 tumor that it is very unlikely to behave aggressively.  The 2012 tumor cells showed scarring from the 2010 surgery and looked a lot less scary than the 2010 tumor cells, which is encouraging.  I just hope this information comes quickly.  Jude is scheduled for surgery tomorrow at 7:30 a.m. (with a 6 a.m. arrival) to place a port in his chest for administering his daily anesthesia for his 6 weeks and 3 days of radiation treatment.  Poor little Jude will be back in the hospital yet again tomorrow and get yet another poke.      

I suppose my only other hope is that IU takes so long getting the radiation mask built that we are ½ way to the next MRI and then I could say that we should just continue to wait and see.  But, this is unlikely to occur since I told the IU doctor that I don’t want them pushing back the radiation too far since we were initially told there was a 30 day window from surgery for maximum effectiveness (although they later said it was 35-40 days when they had some scheduling difficulties).

Jude missed his brothers so much while he was gone, but apparently especially Levi, which was great to hear.  Levi missed Jude and Andy so much too.  But, Levi sure made them pay for leaving him for 2 days.  He wanted nothing to do with them when they returned.  When Andy asked for a hug, Levi clung to me and said, “No.  Mama.”  Jude was super sweet to Levi for about 20 minutes and then they were back to fighting like cats and dogs.

Levi, Asher and I will pick Jude and Andy up from the airport this afternoon.  It will be good to see them.  Levi’s been asking, “Jude Jude, Da Da go?”  As I expected, it appears that Andy and Jude loved Jill’s House.  Since Andy is such a social butterfly, I figured he’d love it.  He was talking with the other dads staying at the house for hours last night.  A number of the children are doing both chemotherapy and radiation at the same time.  They have to drive each morning for 1-1/2 hours for chemotherapy and then come back for radiation.  It sounds brutal so Andy was feeling thankful for our situation.  Chemotherapy is not effective against ependymomas so they won’t mess around with it unless nothing else is working and it’s a do or die situation.

I finished almost all the packing for Indiana already.  So, in case we get just a day’s notice (and it takes a day to get there), we will be ready to go at a moment’s notice.

 

Today Jude and Andy met with the radiation doctor in Indiana and I participated via phone.  The most interesting things were:

• Since Jude’s tumors have been in the left side of his head, he would have been better off if he had been left handed (since he’s right handed and left hemisphere dominated).  I don’t know for sure if Jude would have naturally ended up a rightie, but I have always encouraged the use of his right hand since the world is better set up for righties  Now I’m wondering if it’s not too late to switch him to his left hand since he hasn’t invested much into handwriting, etc. with his right hand.
• Th doctor will radiate the entire tumor bed and the 5-8 millimeters around it.  Some brain tissue has collapsed into the 2 inch area where the tumors were located so he has to account for that.
• The treatment will double Jude’s chance of a cure, from 30% without radiation to 70% chance with it.
• The doctor still claims that having a brain tumor drops IQ 10 points and that brain surgery drops it 1-10 points and that the radiation only drops it 1-5 points.  He will be 4 cm away from the main intellectual area of the brain so cognitive side effects are unlikely, according to him.
• Jude may suffer some peripheral vision loss and lose some visual integration ability (whatever that means).  But, maybe because Jude is young, he can rewire his brain to do this mysterious visual integration function elsewhere.
• Jude will lose his hair where the radiation beams will enter his head, but it will most likely come back.
• Jude’s hormone center will not be affected so no stunted growth should be expected.
• There is a less than 5% chance of moderate hearing loss in the left ear.
• There is a less than 5% chance of IQ change.
• There is an increased risk of brain cancer due to the radiation by 1-5% chance, but he thinks it really is 1.5%.
• The parietal lobe is “an easy place to bang on” and the 2nd best place to have a brain tumor.
• At age 50-60, Jude will have to worry about stroke from the vascular changes due to radiation.
• He will receive radiation for 15-30 minutes a day, Monday through Friday.
• When I asked when he could get started, he said in 8-10 business days (earlier he had told us by the 9th or 10th).  I must have not sounded pleased and he asked me what I was thinking.  I told him that if we are going to do radiation, I wanted it started as soon as possible to increase its effectiveness.  If there are any cells left behind I don’t want them dividing and running amuck.  He then said that he would work an all-nighter tonight and work tomorrow on the 4th of July and I said, “okay.”  I probably should have thanked him for going the extra mile but I was feeling too irritated that he originally promised us a start date of the 9th or 10th and was trying to push it back a whole week.  I don’t feel too bad for him having to work overtime since, if he believes what he’s selling me, this radiation thing may be the cure little Jude needs.  Sounds like the earliest we will get in is the 12th.  But, we’ll get very little notice.  Maybe one day’s notice so we need to get packed and ready to go.