Andy & Jessica

When I returned home last night from meeting my mother-in-law at the park-n-ride, I transferred both sleeping Levi and Asher into the house and spent some time folding laundry.  It made me realize how much I missed Jude when I had to see his little clothes without him in them.  It reminded me of something he told me recently when I was at work, “Mommy I was missing you today.  I saw your coat and you weren’t in it and it made me miss you.”  I was excited when Levi, Asher and I got to speak on Facetime with Andy and Jude.  It was great to see them. 

Jude and Andy seem to really like Jill’s House, the place I found us to stay in Indiana.  There were other kids running around in the background of the video feed.  He made friends within minutes with a little, bald 6-year old girl named Isabella who must be receiving both chemotherapy and proton radiation treatment.  Jude lives to play with other kids so he’ll have a blast. 

Today is a consultation with the radiation doctor in Indiana.  He has lost a lot of my confidence since he has acted more like a salesman than a doctor thus far in consulting with him.  I plan to tell him over the phone what Mayo said about the side effects of radiation and then say something like, “Now that you have had the chance to review Jude’s scans, what can you tell me about the side effects we can expect?”  That will give him an opportunity to fess up without feeling like his back is really up against the wall. 

Jude will also be anesthesized today for a CT scan and mask fitting/proton radiation simulation.

Later this week, unless I’ve taken Jude for a run to the hills, he will have a port placed in his chest that will stay in for 7+ weeks to administer his daily anesthesia for the radiation treatments.  The port will allow him to be poked only on Mondays and the needle will stay in all week and then be removed on Fridays.

I’m thankful that St. Judes is taking a look at the tissue to see if we can predict the tumor’s behavior, but disappointed in the last minute timing of the review, especially since my sister asked our oncologist a month ago if the tumor had been so tested and was told no one was doing such testing.  I’m glad we found the contrary, but wish we already had this information. 

I received the histology images yesterday and had my sister look at them since she teaches histology at NDSU.  One of the histology images showed a mitotic (dividing) cell- a feature that makes it more like a Grade III.  It will be interesting to hear what St. Judes has to say. 

 

We have a little tissue tug of war going on.  Mayo wants the 2012 tissue to run the pathology.  But, our doctor at Children’s wants to send it to St. Judes to Dr. Ellison, who may be able to do some testing to predict the tumor’s behavior (likelihood to recur, spread, etc.).  Since there was only 1 centimeter of tissue from 2012 and both Mayo and St. Judes can’t have it at the same time, I opted to have it sent to St. Judes since I think that information will be more helpful to our decision.  The tissue is apparently still at Johns Hopkins.  I think Johns Hopkins won’t send it directly to St. Judes, but first to Children’s and then to St. Judes, although that seems dumb given that time is of the essence here.  So, this information will likely come at the last minute.  I’m eager to get any excuse to take little Jude and run for the hills. I just hate the idea of radiating his perfectly good brain without evidence of any disease.

Big bummer — Mayo’s pathologist confirmed the original diagnosis.  They reviewed the 2010 slides/tissue.  The pathologist said that while the tumor cells had all the required features of an ependymoma, they did not have the typical features of ependymoma.  The features are apparently “striking.”  Mayo has asked to see the 2012 slides/tissue.  I’m going to request that for them.  Thus, my hope at avoiding radiation is almost gone.

I did get an email from our Children’s oncologist who just returned from an international pediatric brain tumor conference.  She talked to a doctor in Canada who has had 2 children do resection, resection (no radiation).  Italty also has 2 children who have been cured with resection, resection (no radiation).  But, Canada and Italy have 2-3 times the death rate from ependymoma than here in the U.S. so we’d be gambling with Jude’s life.

Our Children’s oncologist did send an email to a doctor at St. Jude’s who may be doing some testing to determine if he can predict a tumor’s behavior by looking at its biology.  She asked him if he would be able to look at Jude’s tumor cells to determine if he can predict whether they are likely to recur and spread.  We’ll see if that pans out.  In the meantime, Jude and Andy are boarding a plane to Indiana.  We can always change our minds before radiation treatment starts or even after it has started if some new, big piece of information warrants it.

Jude is napping so I took to the time to pack him a carry on bag that Andy says is too big, but that I know will delight him.  I wrote Jude a note that he’ll find in the bad:

7/1/12

Hi Jude!

It’s Mommy.  I wanted to tell you that I packed your favorite things — your favorite food, snacks, treats and toys.

I hope you and Daddy have fun on the airplane.  I hope you like Indiana.  Let  me know what you think of Jill’s House.  Should we stay there this summer while you go to the zap doctor?

I love you so much!  Levi, Asher and I will sure miss you.

Love,

Mommy

I’m a bit of a nervous wreck since we decided to pursue radiation treatment.  I forgot to feed Jude lunch yesterday and even forgot our own phone number when leaving a call back number for someone yesterday.  Andy says he feels “awkward.”  I can’t help but think that maybe this isn’t the right decision since I don’t feel very comfortable with it.  I can only hope at this point that we get the unlikely news tomorrow that the tumors were indeed neurocytomas and that radiation isn’t warranted.

I don’t feel too comfortable with it, but we’ve decided to go ahead with radiation. Ultimately, I was the only one on the “wait and see” side. Andy felt all along more comfortable following the opinions of the true experts, instead of me (even though I’d like to think of myself as an expert on this topic now since I’ve read all the lterature). I didn’t really want to badger Andy into my way of thinking because if I am wrong, I’d beat myself up for the rest of my life. Andy didn’t really want to make the decision either since he was afraid that if the tumor comes back after radiation, I’d make his life miserable. So, I figured since neither of us wanted to make the decision, we should let the doctors decide. And, although it is a close call, all the doctors all said we should radiate and that they would radiate their own kids in this situation.

Then we had to decide about how we are getting Jude to Indiana next Tuesday for his proton radiation consultation/simulation/mask fitting session. We were thinking of driving together as a family, but he also checked into flights for just him and Jude. We were so worn out from the big decision about radiation that I suggested we just flip a coin for whether we should drive to Indiana as a family or have just Jude and him fly there. Heads won so Andy and Jude are flying to Indiana next Monday, returning Wednesday and I’ll stay behind and work, assuming we arrange a baby sitter for Levi and Asher.

Then we’ll all head to Indiana for almost 7 weeks. I wanted to make a decision about whether we were going to do this radiation thing before asking my employer whether this can be accommodated. I’d certainly try to work as best as I could remotely. Hopefully it won’t be a problem.

We are back from the appointments with the radiation oncologist and pediatric neuro-oncologist at Mayo.  Overall, we are right back to where we were before the visit.  The radiation oncologist (who, naturally, advocates for radiation), said that in the 20 cases of pediatric supratentorial cortical ependymoma that Mayo has seen over the past 20 years, only 1 case was cured with surgery alone.  I think that statistic is scary, but highly scewed.  For one, surgeries 20 or even 10 or 5 years ago would not have been as likely to result in gross total resection since techniques weren’t as good and intraoperative MRIs machines were not available to assist in confirming gross total resection.  In addition, 10 years ago, everyone radiated after even the first gross total resection for ependymoma so of course they weren’t cured with surgery alone since that wasn’t even presented to them as an option.  She said that she has seen one child with a supratentorial ependymoma (in a location similar to Jude’s) die because the tumor recurred in an area of the brain that was too deep to resect.  She said that 67% of patients with gross total resection without radiation had their tumor come back (in other words, she thinks there is a 33% chance Jude is cured now without radiation).  That’s similar to what we’ve been hearing, although we heard it could be up to a 60% chance of cure without radiation.  She said that there is a 25% chance that the ependymoma will still come back after radiation.  That is also consistent with what we’ve heard (we’ve heard up to 33% chance it will come back regardless of radiation sometime in the next 23 years).  The most surprising thing she said was the big impact that the radiation would have on IQ.  The Abbott radiation oncologist didn’t expect any cognitive changes.  The IU proton doctor said there would be no impact and that the brain tumors and surgeries are what causes the drop in IQ.  This lady said that they see a 1-2 point IQ drop for every year until the child reaches age 9 or 12.  In other words, Jude’s IQ could drop 10-12 points.  It’s possible this impact would be less with proton radiation.  It’s possible that neurotherapy in the future (which is in development) could assist in getting back some of what is lost.  She also said it could help that we homeschool Jude and could pay more attention to him than a traditional school environment and that because of that he might not have a big drop.  It sounds like it takes 4-5 years for the IQ drop to show up in IQ testing.  She also said that although radiation can be done to the same location twice, but the side effects double and there is a 20% chance of brain acrosis the 2nd time around (which I think means brain damage due to the healthy brain tissue liquifying from the radiation).  She said, unlike the other 2 radiation doctors we spoke with, that if Jude could make it to 9 or 12 without radiation, the impact to IQ would be minimal.

The pediatric neuro-oncologist said that the fact that the tumor regrew tells us something about its biology.  She said the initial tumor was “an ugly looking tumor.”  I’m not sure what she meant by it, but I took it to mean that it’s not something that we want to mess around with.  She also pointed out that the tumor bed is near the surface of the brain.  That’s good for 2 reasons and bad for another.  It’s good because it’s easy to get to in a surgery and less good tissue would have to get radiated on the way there, but bad because any residual tumor cells could leak out of the tunnel that was created from the surface of the brain to the tumor bed and don’t have too far to travel to do that and that would then be fatal.  She said we don’t know whether this recurrence is a progression of what was left behind or a true recurrence.  She also was concerned about the tumor coming back deeper in the brain and having to sacrifice Jude’s vision to get to it.  She agreed with the 1-2 points per year in IQ drop from the radiation until he’s 9 or 12.  She also raised a new issue about research that is showing that during proton radiation, the protons may get contaminated by the neutrons and then the neutrons can scatter and cause secondary tumors throughout the brain.  She said it would be “fair to go ahead with radiation.”  She said it is “not an easy decision” and that not radiating would not be the “wrong decision” and would be “OK” but that we would be “taking a chance.”  Overall, her 3 concerns with waiting and seeing (as we’ve been doing): (1) the pathology changes to Grade III; (2) the tumor travels to the surface of the brain and then is fatgal; or (3) the tumor spreads deeper into the center of the brain and then becomes difficult or impossible to remove without causing severe neurological injury, loss of vision, etc.  She said that we should go with our gut.  The only curve ball she threw at us was that the tumor from 2010 and this latest tumor have the features of ependymoma (which was his diagnosis), but also have features of neurocytoma.  Neurocytoma usually occurs in the middle of the brain and is a less aggressive cancer than ependymoma and would be a better cancer to have, although it is even more rare than supratentorial cortical ependymoa.  She said that if it is a neurocytoma, she is not sure if radiation is warranted.  It’s unlikely to be a neurocytoma since the pathologist at Children’s and the pathologist at Johns Hopkins both agreed on pathology both times.  And, Mayo said that the Johns Hopkins doctor is the best pediatric pathologist in the country.  Right now, I’m hoping that guy made a mistake and misdiagnosed Jude.  That would give me the get-out-of-radiation-free card that I so desperately want.  Mayo has requested a block of tissue from Children’s so they can do the tissue staining themselves and we should have final pathology on Monday.

Monday is when we are supposed to be driving to Indiana for the proton radiation simulation/set-up.  I know it’s unlikely, but I’d love to get a call from Dr. Rao from Mayo that it was a neurocytoma and that we need to turn around and not radiate Jude’s cute, little brain.  I absolutely hate the idea of radiating Jude’s brain when we have no reason to believe they’d be radiating anything but healthy tissue.  We think the surgeon got all the tumor cells.  The thought of radiating Jude is a thought right out of a horror movie for me.  First, they will knock him out, then they will restrain him, then they will put on some custom-made, radioactive mask on his face and then they will shoot radiation into his head that is designed to kill cells.  And, to think we would voluntarily deliver him to the radiation treatment center  every day for 6 weeks and 3 days to have his brain cells killed is just the most repulsive thought to me.  I’d be racing him there if I knew there were some bad cells to kill, but we don’t know that.

But, then again, I hate the idea of burying Jude is a box one day because I’m trying to keep the same kid that I’ve got and not have to worry about all the side effects of radiation, including stroke and more brain tumors.   URGH!  Andy’s gut says to listen to the doctors and radiate. If I go along with that, I’ll be furious if this tumor came back regardless of radiation and we wasted one of our radiation attempts.   This is tough.

 

Jude says the cutest things and I wish I had him recorded 24/7 since he’s so entertaining.  This morning, I was giving him a hard time for not putting his cup in the sink and straw in the garbage can after drinking his Kool-Aid/medicine last night before bed.  He said, “One of the bad things about being a parent is that sometimes, if the kids don’t clean up, you have to.  And, I’m the kid.”  He’s 5, going on 15.

Asher is taking a page from Levi’s book and is taking steps at 10 months. He’s been table walking for 2 months now, but has been getting braver and stepping out. Where’d my baby go? He’s also working on his 4th tooth. The top 2 teeth are large and quite cute. One person thinks he looks like me, which I love. Everyone has always said that Jude and Levi are Andy’s clones so it’s nice to have at least 1 person who says one of them looks like me.

Jude always begs me to take him to work (Levi too — he says “I too, I too, I too” whenever I leave for work).  I decided today would be a good day for Jude to join me at work for a couple hours since Andy and the boys picked me up in the afternoon for an occupational therapy (fine motor skills) evaluation for Jude and then there were only a couple hours left in the work day after that.  After Jude and I got dropped off, we went to CandyLand to picks out some treats and then to Target so he could pick out a new toy from the dollar bin.  Then we went to work.   It was kind of a disaster.    I didn’t want to announce he was visiting until towards there was only about a half hour left in the day so I could actually get some work done without nice visitors stopping by.  I told him to be quiet like a mouse so I could work with the door shut.  He struggled with being quiet.  I picked up a phone call and the little stinker in Jude came out.  He started writing all over my bare arms with 3 different colors of markers while I was trying to pay attention to a difficult fact scenario.  I’m sure he knew I couldn’t yell at him while on the call and that he could get away with it.  Then he started laughing loudly in the background.  I finally had to announce to the caller I had a little helper at work today.  I was so annoyed with him and we jointly decided that he shouldn’t come to work with me until he’s 8.  After a stern talking to, he was perfect for me the rest of the day.  But, he did get in trouble from the bus driver on the way home since he didn’t want to sit down and preferred standing in the aisle while balancing and holding onto nothing.

Earlier in the day when we went to Children’s Hospital, Jude said, “Why do I go here everyday.  It’s like I live here.”