Andy & Jessica

In preparation for the meeting with Jude’s oncologist today, I read all the literature (5 articles) describing what happened to various patients world-wide with this tumor who received different treatments.  So, I feel like I know more than ever what we are up against.  After the meeting, I’m feeling more comfortable taking our chances on the surgery alone being the cure for Jude.  The big take-aways for me from the meeting and articles were:

1.  Surgery alone is often curative for ependymomas if gross total resection is achieved and given that the tumor was smaller the 2nd time, and the surgeon thinks he got it all (as he did last time), the 2nd surgery should have been easier than the 1st one.  Nevertheless, the standard of care at recurrence is radiation.  We found 3 patients world-wide attempting surgery only at recurrance with the same type of tumor and it worked well for 2, but the other died from his tumor (it kept recurring and they hit it with radiation and chemo and it didn’t work).

2.  Given the small #s of similar patients involved (20 or so worldwide), we don’t have good data, but her gut reaction is that there is a 20% chance the tumor would come back after radiation.  There is a 30-60% chance the tumor would come back without radiation.  I would be sick if that tumor came back after radiation.

3.  If there is any residual tumor cells in Jude (which we hope is not the case), there is a 30% chance they will morph into a more aggressive Grade III cancer.

4.  Jude’s tumor isn’t associated with the ventricle, which lowers the chance of spread into the spinal fluid.  However, given that the surgeon had to cut a path from the surface of Jude’s brain to the tumor bed, any residual tumor cells could seep out to the surface of the brain and that would be most likely fatal.  The chance of metastasis at another recurrance (which would be fatal) is 5% or so.

5.  Even with radiation, the tumor can still come back and still spread before it is detected.

6.  15% of children with supratentorial cortical ependymomas die somehow from their tumor (from the tumor getting too deep in the brain to be removed or from spread.  But, this accounts for all Grades of the ependymoma and Jude has a Grade II rather than Grade II and Jude’s location is more favorable than other locations.  So, we are still looking at a big chance of a great out

7.  I told her that $ is no object here and we can self-pay if we have to and wanted to know if there is anyone else that she feels we should consult with.  She’s going to follow up with an oncologist with emphasis on ependymoma in Denver who doesn’t always do what everyone else does to see what he thinks about Jude’s case.  She thinks he is more likely to think that not doing radiation would be a good decision.  She did say that if we decided not to pursue radiation, it would not be a “bad decision.” 

8.  When I asked her if she would do the radiation at this point if this was her own child, she hesitated and said slowly (while thinking about it), “I think so.”  She said that that is a very difficult question to answer and she’d like to think she practiced medicine that way.  Overall, I got the impression that she would really wrestle with this decision, just like I am, if this were her own child. 

9.  She said that the radiation “could just look like it’s helping because so many patients get it.”  In other words, it may not actually be helping. 

 

No cancer cells were detected in Jude’s spinal fluid, as I expected, but it’s a relief nonetheless.

Tomorrow morning is our meeting with Jude’s oncologist.  We’ll leave Jude at home so we can get a word in edge-wise, not be distracted, and not have to worry about him eavesdropping.  Tomorrow night we have a call with the proton radiation doctor in Indiana.  He accidentally called tonight instead.  I had about a 3 minute call with him, after he realized he called a day early since I sounded so surprised to hear from him.  I got a good vibe from him.  He has 2 boys and the youngest’s middle name is Asher.  I told him I was going to grill him tomorrow when he calls back.  I’ve got my list ready.  I’m still leaning “no” and Andy is leaning “yes.”

Jude is no dummy. He is a master manipulator and often gets what he wants from me by wearing me down by asking so many times or appealing or negotiating. I feel like I’m raising an attorney, but I want him to be a neurosurgeon instead.  He is also homeschooled and we only ask him to do 2 hours of schoolwork a day. I spoke with him today and he had failed to convince Andy to let him skip his morning 1 hour school time. So, he appealed to me for help by saying, “But, I just had brain surgery.” His sad little appeal worked and I agreed he could skip his morning time and tack it onto his afternoon time, which he agreed to, but apparently never did.

On another front, we still have not gotten the results of the spinal tap. This is starting to trouble me since the doctor promised me preliminary results by the end of yesterday. I have even put in a call to Children’s to ask about the results.

On yet another front, I had lodged a patient complaint about how the paramedics did not respond properly to Jude’s seizure and did not listen to me when I said he was having a seizure and needed oxygen. I heard back from their supervisor who said the crew was shocked to learn from me that Jude indeed had a seizure and that that was not the way they are accustomed to seeing seizures. He said that the crew has been educated about the ways various seizures will manifest themselves and that they will be able to respond better in the future. Next time, hopefully, they will listen to patient’s loved one. I know I will be more forceful and confident that I am the expert next time and that they need to listen to me.  I will not leave Jude’s side until I know they are responding properly.

All along, until last Sunday, I had been firmly in the camp (BY MYSELF) of banking on the 2nd surgery being the cure, which it statistically probably should be.  However, after receiving a scary email from Jude’s oncologist summarizing the few case studies, in which they talk about trying to “salvage” the patient after ependymoma recurrence with radiation treatment, I was scared into the same camp with Andy and our oncologist and radiologist and agreed we’d go down the radiation road unless something the radiation doctor says when he talk with him later this week spooks me.  But, now I’m wavering.  Neurosurgeons don’t like radiation treatment to the brain of young children for the obvious reasons of impact to cognitive, fine and gross motor skills, and sensory function.  Oncologists like it because their job is to cure Jude of his ependymoma cancer and radiation would would increase the likelihood of a cure.  It would be someone else’s job to fix him from the side effects of the radiation.  And, of course radiation doctors like radiation.  It’s hard to know who to listen to.  I just don’t want to get this decision wrong!

 Jude, with the moustache he won at Children’s as his prize for enduring the spinal tap today.

 

This morning Jude has his spinal tap at the crack of dawn. We dressed the boys in normal, comfortable clothes last night instead of pajamas since we had to be out the door so early. I made sure that the doctor knew that the last spinal tap did not turn out well and asked him for ideas to make it go more smoothly. He decided it would be a good idea to give Jude IV fluids since he’d have to have an IV anyway for anesthesia and having him well-hydrated would decrease the chances of headaches. He also suggested giving Jude anti-nausea medicine preemptively, which I agreed to.

Jude hated getting his IV put in today.  They needed 4 people to restrain him and a worker down the hall said he has “lungs like a rock star.”   Poor, sweet darling!  I’m glad that he is such a fighter though.  He needs to be.

Given that the whole reason why we delayed the spinal tap until today was so that we could have the suture removal done under anesthesia, I was shocked when they told me that there were no orders for the suture removal.  I said that they needed to track down someone to remove his sutures while he was under anesthesia or I would do it myself.  Thankfully, they were able to find someone to remove the sutures.  As an added bonus, they even agreed to remove a bad sliver that Jude got in his heel from stepping on a stick a couple days ago (Jude wouldn’t let me near it to take it out).  I even took advantage of Jude sleeping and removed some adhesive left over from the surgery from his cheeks and forehead.  I would have liked to have cleaned up the gunk behind his left ear, left over from surgery, but he was sleeping on the wrong side for me to do that job.

We should get the preliminary spinal tap results today and then final results in the next couple of days.

We got confirmation from Johns Hopkins that the tumor is Grade II, rather Grade III.  It was still cancerous, but a less aggressive version, but potentially fatal, nonetheless.

We still have many unanswered questions, which is frustrating.  I want answers and I want them now.  We need to decide probably by Friday whether to pursue radiation.  Jude would have to get fitted for his radiation mask next week in Indiana (10 days before treatment begins), since treatment must begin within 30 days of surgery for the best results.  That means radiation would have to begin by July 6th. 

 

I’m praying that Jude responds well to the spinal tap tomorrow and that we get confirmation that the cancer hasn’t spread to the spinal fluid.  The last spinal tap he had when he was 3-1/2 didn’t go well.  In fact, he thought he was going to die and said, “I think this day we’re going to heaven.”  When I asked why he thought that he said, “Because my head hurts so bad.”  He even had to get put on anti-nausea medicine since he kept throwing up everything, including his anti-seizure medication, which was very dangerous since it went on for days.  The poor little darling!

We got an email from Jude’s oncologist today saying that she wasn’t going to be meeting with us tomorrow after the spinal tap because she doesn’t work Mondays and is booked with appointments for her and her kids.  Weird since she was the one whose idea it was to have the spinal tap tomorrow and then to meet with us afterwards to answer our million questions as we consider whether to pursue proton radiation treatment.  Here my mom had made a special trip to the cities to spend the night with us tonight so that she could watch the boys for us tomorrow while we met with the oncologist.  I guess we’ll meet with her later this week.  But, this isn’t good from a timing perspective since we need to make a decision ASAP regarding radiation and I bet I’ll have follow-up questions for her.

Jude’s oncologist did respond to some of my earlier questions and provided summaries of the various research papers on outcomes of children with supratentorial cortical ependymomas.  Overall, I was pretty scared after reading her summaries.  I hate reading about the children who have died battling the same tumor that Jude has.  It’s very, very frightening to think we could lose him at any time.  It’s very frightening that there is almost no research in this area and almost no data to pull from since this type of tumor in the location Jude has had it is so rare.  Certainly radiation is no guaranteed cure, but she has recommended it, to increase the cure rate, after looking at the latest research.  There is only one family that is attempting to do what I wanted to do — resection, resection and wait and see (i.e, no radiation).  So far, after the 2nd resection, that kid’s ependymoma has not come back but the follow-up is only 15 months and these tumors like to keep popping back up to 23 years later.

The radiologist told us that they only like to do radiation one time.  It’s scary knowing that this tumor doesn’t always respond to radiation.  This would be our one shot.  Although my decision would scare the heck out of me, I think I would decide to take my chances on the 2nd full resection being the charm and not pursue radiation treatment.  But, I may let Andy make the final call.  He said something tonight that makes sense — God gave us all these doctors and they are all recommending radiation to increase the cure rate so maybe we should just listen to them.  I’m just worried that they are so worried about curing him of his ependymoma and not fully considering the can of worms that radiation opens up.

On another front, I’ve noticed that Jude isn’t himself on this anti-seizure medication, which is troubling.   The main side effect of the medicine is “irritability.”  He’s like Jude on steroids.  He’s so jittery and can’t concentrate.  My favorite thing to do with him has always been to have him sit on a lap and then we take turns reading pages of the books he picks out (he always looks ahead and picks to read the page with less words on it).  He can’t sit still anymore and flails about.  I hope it’s just his body adjusting to the medicine and that he’ll be used to it soon.

Asher doesn’t sleep much, for a baby. But, he does power nap. I set him in the high chair to eat some dinner and he fell asleep. I cleaned up his face and let him sleep there for 10 minutes or so, intending on transferring him to the crib. He woke up after 10 minutes and picked up eating right where he left off. Cute kid. And, if it’s possible, he’s getting even cuter — the first of his top teeth has poked through and he’ll soon have 3 teeth.

Monday will be another big day.  Jude has a spinal tap scheduled for bright and early in the morning to ensure the cancer cells didn’t spread to his spine.  I would be surprised if they spread, but it will be a relief nonetheless.  He will be sedated for it.  While he is sedated, I requested that they will remove his sutures.  That will be great since he is sewn up like a football and would be totally traumatized if they removed the sutures while he was awake.  After the spinal tap, Andy and I will meet with Jude’s oncologist.  I gave asked her a number of questions and requested a number of things.  We expect to get some information that will be very critical in deciding whether to pursue proton radiation treatment, which we’ve been told is the “standard of care” in this situation.  However, I suspect that there is really no standard of care in this situation since this situation very well could be a matter of first impression giving the rarity of supratentorial cortical ependymomas and the fact that it is a Grade II rather than Grade III and was fully resected once again.  I bet there is still a really good chance that the resection alone is a cure, as it statistically should have been the first time.  But, do I want to gamble with Jude’s life?  But, really either decision — to radiate or not to radiate — is a gamble.  Brutal.

The 3 boys really keep me hopping and I often feel like I just chase after them or have them chase after me and clean up one mess after the other. Tonight Jude and I were baking some banana muffins and making some popsicles made out of yogurt, peaches and juices when Asher wedged his way into the fridge and grabbed a container I thought he shouldn’t have. I didn’t want to upset him, so I traded him for a large, full bottle of Gatorade, after ensuring the cap was screwed on tight. I never would have expected him to figure out how to open that container, but he managed to bash it enough times against the floor that he split the bottle open and was soon splashing in a pool of Gatorade all over kitchen floor. It’s one thing after the other around here!