Andy & Jessica

I’m no different than other parents.  I am absolutely crazy about my boys and think they are truly exceptional kids.  I really can’t say enough about my 5- year old, Jude, and I’m sure my bragging borders on obnoxious sometimes, but I can hardly help myself.

From the day he was born, Jude was the love of my life (sorry, Andy). He has always been a Momma’s boy. My little shadow. I have poured so much energy into him, putting his needs above my own, loving him, entertaining him and teaching him.

With so much attention from me and others, he has developed some amazing talents over the years.  At about a year old, Jude showed affinity for letters of the alphabet.  By a year and a half or so, he knew his alphabet, the vowels and the purpose of vowels (the glue that holds the words together) and he began spelling words.  By age 2, he was reading.  By age 3-1/2 he was riding a bike without training wheels and showing off his amazing memory by memorizing all the U.S. states and U.S. Presidents.   He is homeschooled and watches most of his t.v. in German and got so good that we decided to also introduce him to French, which he is picking up quickly.

Although he is exceptionally bright, Jude is a typical boy.  His favorite things to do with me are playing chase (he likes to chase me while I’m carrying Asher); wrestling;  playing pow with foam swords or light sabers; biking; playing outside with his neighbor friends; and baking (and sampling our creations while they are in the works).  He also loves walking to the library and getting lots of new stories to read about Transformers, Ben 10 (his favorite super hero), Scooby Doo, Marvel super heros, Amelia Bedelia and all the funny Mr. and Little Miss stories.  He enjoys playing computer games, video games on the XBox or Wii, playing Andoird tablet and iPad apps and watching cartoons in German and French.   He also enjoys watching Andy fix stuff around the house.

Although he is all boy, Jude is such a sweet boy and loves to snuggle.   He tells me that he loves me probably 10 times a day.  He likes to say, “I love Mommy, Daddy, Levi, Asher.”  He is such a great big brother to Levi  and Asher.  For years now, I have told Jude, “I love you to the moon and back, times infinity, to the power of infinity.”  He started responding when he was 2-1/2, “I love you up to God and back down, to the power of infinities.”  Then when he was 3 he told me that he loves me more than I love him since “up to God and back down” is more than “to the moon and back.”

Since he was always such an fun, active boy, we were just shocked when we learned when Jude was 3-1/2 years old that he had brain cancer.  The Grade 2 ependymoma tumor was diagnosed after a scary seizure episode that had us arriving at Children’s Hospital by ambulance.  I remember him laying unresponsive on the table in the ER, the face of the guy standing over him pumping the turquoise-colored bag to help Jude breathe and them cutting off his cute, “Daddy’s Co-Pilot shirt.”  I remember the face of the ER doctor who gave us the bad news that the CT scan revealed something troubling.  But, I also remember how God kept us strong during that terrible week and that Jude was back to his Jumping Jude self in days and was released directly from the ICU at the hospital after jumping from the couches and riding cars Flinestones’ style down the hallway of the ICU.  We were so thankful that the neurosurgeon was able to do a full resection of the tumor and that Jude appeared to suffer no side effects from the brain surgery.

At a recent triannual MRI, a year and a half after the first tumor was removed, we got the bad news that the spot that they were watching for the past year and were hoping was just scar tissue had grown by 1 mm x 2mm x 3mm in the past 4 months.  Scar tissue shouldn’t be growing after 1-1/2 years so we can only assume it is tumor.

It is so troubling knowing that Jude hasn’t beat this cancer yet.  I want this thing to go away and for good.  I have enough to worry about, knowing that this type of cancer can pop up as much as 20 years after it last appeared.  I want that 20 year clock to start ticking and then maybe I can stop worrying about him when he’s 25, although somehow I know I never will stop worrying about him.

Overall, I feel like Jude will survive.  But, maybe selfishly, I want him to thrive.  I don’t want them radiating his genius brain.  I don’t want him to risk suffering vision loss, hearing loss, cognitive impairment or secondary cancer as a result of the proton radiation treatment that they want him to undergo.  I want them to do a full resection, for the tumor to be Grade 2 and not the more aggressive Grade 3 and hope the 2nd time is the charm.  I want to get comfortable that it is in Jude’s best interest to undergo only the resection and not the standard proton radiation treatment (unless this thing comes back a 3rd time).

Although I’m doing a lot of thinking and worrying, Jude is unaware of most of it.  He knows he has a head owie called a brain tumor, but he doesn’t think it is a very big deal, which is the way I want it.  Jude is also aware of the power of God to heal people and is very curious about spiritual matters.  He loves learning bible stories and his favorite activity over the past year was attending Armor Bearers bible memory club at church.  He loves talking about God and telling me, “tell me more about heaven.”  As wonderful as Jude is, he’s not, of course, perfect.  He doesn’t always obey his parents (a violation of the 5th commandment, we tell him) and often covets toys or candy (a violation of the 10th commandment).  We talk to Jude about God, Satan, heaven, and hell.  We talk about how we’ve all sinned and we talk about his sin.  We tell him that because people aren’t perfect and have all sinned, and God is a just God, we deserve to go to hell.  A good analogy is that if someone commits some horrible crime, like murder, the judge would be unjust if he set him free.  God would be an unjust judge if let us get into heaven in spite of our sin.  Although we deserve to go to hell, that’s not God’s will.  God wants all people to be saved and spend eternity with him in heaven.  That’s why God made a way for us to get into heaven in spite of our sinful nature.  He sent Jesus, who is God incarnate to be born and to live a perfect life as a man on earth.  Jesus never sinned.  When Jesus died on the cross, a great exchange took place — Jesus’ righteous was imputed to us and our wickedness was imputed to him.  I have told Jude that this is a “good deal” and that we should “take the deal” — we did the crime, but Jesus paid the fine.  I like to tell Jude that there are two ways to get into heaven: (1) be perfect (and he knows he is not since he knows he has sinned); or (2) repent and trust in Jesus alone for forgiveness.  I tell Jude repentance means that we have to say sorry to God for our sins and try not to do them again.  I tell Jude that trusting in Jesus alone for forgiveness means that we can’t bribe our way into heaven by bringing God a plate of cookies or telling God that we were better than the next guy (since perfection, not goodness, is the standard).  It is comforting to know that my precious little boy is in God’s hands, which is certainly a great place to be.

Admittedly, I was hoping Jude’s brain cancer had disappeared after the surgery 1-1/2 years ago and hadn’t taken the time to get to know what we are potentially up against. I still have quite a few unanswered questions, as shown below.

Hi Dr. Bendel,

I have some follow-up questions for you. None of them are time sensitive, but instead are things that I have been curious about, but haven’t had the opportunity to ask. You can respond over email or when we see you later this week after Jude’s surgery.

1. Where could this tumor spread to? I believe you mentioned at our last appointment that it could spread to the surface of the brain and the spinal cord. Am I missing anything?
2. If it spread to the surface of the brain, what are the consequences? Is that a worse location for purposes of a full resection or worse as far as what that area of the brain might control?
3. What are the consequences of the tumor spreading to the spinal cord? What sort of surgery/treatment would typically be involved?
4. Can you tell me Jude’s specific diagnosis, using all the appropriate medical terminology? Grade 2 ependymoma, left parietal region. Anything more specific than this?
5. Does the fact that Jude’s tumor has recurred make it more likely to be Grade 3?
6. Do you happen to know what was done with Jude’s tissue sample from the 1st surgery?
7. Do you happen to know if Jude’s tissue sample from the 1st surgery was tested for biomarkers (proteins that play a role in the tumor’s aggression) and, if so, what the researchers found?
8. I remember you mentioned originally that there were 13 kids researchers were tracking with the same tumor as Jude’s in the same location as Jude’s. I remember you said there was a 14% chance of recurrence the first time around. I believe you have since mentioned that the chance of recurrence would be greater now since it has come back once. Do you happen to know what that percentage of a 2nd recurrence would be, assuming Grade 2 and no proton radiation treatment? Where does this data come from (is it limited to those with the same Grade and location of tumor as Jude’s or is it more generalized data)?
9. My understanding is that the risk of proton radiation is potential vision loss, vision loss, cognitive impairment and secondary cancer? Am I missing any potential risks? What is the chance that these various things would happen as a result of the radiation treatment? Maybe this is a question for a doctor at one of the proton radiation treatment centers.
10. My understanding is that the risks associated with brain radiation decrease with age, with it being the riskiest for children under 7. Is that correct? Maybe this is a question for a doctor at one of the proton radiation treatment centers.
11. My understanding is that the risk of waiting to perform radiation treatment is that the tumor tends to grow back deeper in the cavity that was created from the earlier resections and that it can be harder to remove in the 3rd surgery or it can spread. Are there any other risks to waiting to perform radiation treatment?
12. My understanding is that, based on the results of the functional MRI, Jude’s sensory function is controlled by a part of his brain that is located about 2.5 cm away from the tumor location. This seems like a safe distance to me. Is that understanding correct? Are we aware of any other vital functions that are controlled by an area in close proximity to Jude’s tumor location?

Thanks so much for your help and for always doing such a great job taking the time to explain stuff to us!

Jessica

The 3 boys and I went to a nearby splash pad today to give Andy a quiet house so he could edit his podcast. The boys just loved the splash pad, but the water was cold so they only lasted about an hour. We then walked to an adjacent playground (where Levi nearly gave me a heart attack by repeatedly going down a 20 foot tall slide that was shaped like a curly fry), and then yet another adjacent playground. Jude loved setting this new record of going to 3 parks in 1 day. We’re trying to cram in a ton of fun before Jude’s surgery on Wednesday.

Jude is a good big brother and really loves his little brothers. While I’ll get to keep Asher in the hospital room with me and Jude under a special nursing exception, Levi is too little (age 2) to come visit under Children’s Hospital’s strict visitor policy that discriminates against all children under 5. Jude said he hopes that Levi gets an owie and has to go to the hospital so that Jude can see him. It will be really hard to away from Levi. I know I won’t want to leave Jude’s side, but I suppose I will have to sneak away to the hospital play room to see Levi. Of course I’ll be worried the doctors will come visit while I’m away from Jude’s side. Our plan is that Andy will come home at nights and sleep with Levi. We’re hoping for a quick recovery and short stay since we spend way too much time in the hospital.

Jude was really excited to sing to me a song he wrote today. It goes, “Christmas, Christmas, is so good. I love God, like I should.” We’ll have to get some audio of him since he’s got the cutest little voice.

I really thought I was doing a great job shielding Jude from the knowledge of his life-threatening medical condition. I thought he only knew that he had a head owie (which he also knows is called a brain tumor) and that it has to get taken out since it had come back.   But, he knows more than I thought.

Last night when I was laying down with him to help him fall asleep, he told me, “You know that people can die of brain tumors.” I then pretended to be clueless and asked him what he meant and he said, “If you don’t take them out, they keep growing and growing and pretty soon you can’t think and when you can’t think, you die.” 

I don’t think he thinks he’s going to die since he knows his tumor is coming out, but he did express concern that the tumor is just going to keep coming back.  I then told him that we would just have to pray to God that He would take away the head owie for good.  Jude started giggling with excitement when we discussed how God can do anything.  God can fix a head owie without surgery or God can fix a head owie with surgery. 

I found it a little troubling that Jude then wanted to talk about what heaven is like.  I kept trying to end the conversation and go to bed, but he kept saying, “Tell me more about heaven.”  I finally cut him off after about 30 minutes at 11:30 p.m.

I gave into the temptation tonight to google something along the lines of “ependymoma brain tumor child survival rates” and am feeling a little sick to my stomach. From what I read, the survival rates are higher for those children who undergo radiation, but at a big cost. Those under age 7 are much more likely to have cognitive impairments from the radiation. This is rough.

Asher just turned 9 months old, but is a real hand-full due to his physical prowess. He’s a super fast crawler and has been table walking for more than a month. Tonight I was carrying Levi and an ironing board upstairs. Asher felt left out and crawled up the entire flight of stairs to get to us. He’s trouble, but cute trouble.

Given Jude’s heavy focus on learning German, I find it funny when I can see the German influence in his English since he sounds like the cutest little foreigner when he does this. He just asked me for the “sun cream” (instead of the sunblock) so he could go outside and have a water gun fight with the neighbor kids. He also sometimes calls the playground the “play place,” and calls a polar bear an “ice bear” using literal translations of German to come up with the English word.