Just when you think you have things figured out......

6:24:00 PM Atticus Army 4 Comments

Hey Army, 

Well, it has been quite the crazy week.  Emmie and I were anxious as it was for the MRI scheduled on Tuesday as part of our preadmit visit for chemo cycle 4 on Wednesday.  As you have probably gathered from previous posts, CPC (choroid plexus carcinoma) is a pretty aggressive cancer.  So needless to say Emmie and I had "scanxiety" in full effect.

He likes coloring while we wait to go back

My wife's sister was soooo kind and drove out to be with us during the scan, and to take our kiddos for the week so that Emmie and I could both be with Atticus during his chemo treatment.  Sure enough Tuesday morning came and we found ourselves sitting in the radiology waiting room asking each other how we ended up here.  I find myself more ad more lately reflecting on the choices, decisions, paths, and turns that lead my little family down this path.  It's oddly amusing to look back just a few short months ago and recall, all too vividly, how I felt that everything was decided, and working out just how we had planned.  I guess I would say to my past self, "  The best-laid plans of mice and men often go awry.  No matter how carefully a project is planned, something may still go wrong with it."

Boy isn't this true.  I am not saying this to complain, or self-defeat, it is just a fact.  It seems often in life that once you feel that you have it all figured out that something comes along to test the foundation as it were.  It seems that our foundation was in need of some repair.  Emmie and I have spent many days and nights full of tears, frustration, anger, resentment, and fear.  But, above all weakness, we have found that neither myself or Emmie could have done this on our own.  The path we find our little family on is a tricky one and traversing it all the way to the end doesn't guarantee all of your troops will be present.  We have seen first hand how easy it is to fall off, and the results are devastating to a family.  It is so easy to let that anger, and frustration to turn onto those that are close to you.    We have out of necessity learned that our strength needs to be firmly planted both in each other and buoyed by the Lord.

We handed our little warrior off to the anesthesiologists once again and sat and waited.  After what felt like a lifetime our little guy was returned to us, and to him at least he was only gone for a moment.  Our wonderful nurse practitioner poked her head in and said, "Hey I just walked by radiology, and first there is no evidence of any tumor growth at all!!"  We, of course, were elated and relieved.  It felt like the biggest weight was lifted off our shoulders.  But then we realized that she said, first off.......  It was like waiting for the other shoe to drop,  she said that there appeared to be a "trapped ventricle" and our neurosurgery team was looking at it and we would meet with them later.

What did this mean??  Well, as it turns out as Atticus's brain healed after the initial resection there was a portion more towards the front that got walled off by scar tissue.  One way to look at this would be to think about a lake with multiple inlets but only one outlet.  If you were to dam up one of the streams that fed into the lake over time it would continue to swell and swell with nowhere for the incoming water to go.  The lake would receive minimal impact as this was only a small feeder stream, but to the areas surrounding the stream it could potentially have a big effect.  This is very similar to damming off a section of the ventricle.  The cells that reside in the isolated part will continue to produce fluid, and with nowhere to drain, it swells, and the body produces a cyst.  

Elsewhere in the body, we would probably just pop it, let it drain and forget about it.  In the brain, it isn't quite that simple.  In growing and swelling there are a lot of things that can be damaged, much like the vegetation, and life surrounding that little stream.  But in this case vegetation is represented, by motor function, speech, balance, higher learning and all the life sustaining things that your brain does each day without you even knowing about it.  This, of course, needed to be addressed.  At this point, the cyst wasn't big enough to cause any serious, or permanent side effects, so the question wasn't if the intervention needed to take place, but that of when.  

Chemotherapy is a very thin line to walk on, we want to give enough medications to disrupt and destroy cancer-causing cells, but not enough to cause irrebuttable damage to the normal function of the body.  The gap between these two effects is typically termed the "therapeutic index."  Think about it as the distance between two points, the further the two points, let's say..... Seattle to Pullman, the safer the drug, and less of a chance of undesired side effects.  But if those points were to be from 145th street to 150th street.  You can see how that window isn't very big.  Atticus currently was in this little window where he had recovered from the last round of Chemo enough to start the next round, but in starting the next round that gap would close and then doing other things like surgery would be much riskier.  

So the decision was made to postpone our next chemo cycle in lieu of this window.  So the next question was how to fix it.  They decided to have us wait and they would present it at the tumor board meeting on Wednesday.  So we meet with the chief surgeon on Wednesday afternoon and we concluded that we would open a portion of his original incision up and then endoscopically fenestrate (cut holes in) the cyst to try and help it communicate with the rest of the ventricle so it can drain.  Then they put in a catheter in that would come out to his skull just under the skin so that if it formed again they could tap into this reservoir and drain it without us having to go to surgery.  So we were set for surgery on Friday.

It is important to keep your mind occupied during surgery!  We resorted to cards.

While it is true that this surgery is very different then the last big surgery we went into, our nerves couldn't tell the difference.  It was hard to send Atticus back into surgery when he was doing so well. We felt that we had finally got on top of all the side effects of chemo, and he was acting like a normal terrible two years old should.  Telling us NO, getting into everything, throwing fits, and Emmie and I love every single one of them! In fact, he has got quite a sassy attitude on him, he cracks us up.  

Inevitably Friday came, and we came to check in for our procedure.  We were able to meet with our surgeon prior to him heading for anesthesia.  She reassured us as the chief surgeon did that this surgery is nowhere near the risk, or technical nature as the one we have already gone through, but, it's still brain surgery.  We handed our little boy off yet again around 12:30 for his MRI after which he would head straight to surgery, followed by a post surgery MRI to confirm placement.  The next 5 hours seem to just slither along and a snail's pace.  Emmie and I did the best we could to pass the time without worrying and found ourselves in the gift shop buying a deck of cards and commenced to play Jin, BS, and other such games to pass the time.

It was so sad to see this again.... we felt so bad for our little guy!

If you look close, you can see a little line that goes from the middle of his brain to that base of that little bump on his head.  That is the catheter they put in, so they could access the trapped ventricle if they had to.

Finally, we were able to hold Atticus again, it's always an emotional reunion to have him back safe in our arms! We snuggled him in recovery and then we were brought up to our room around 6:30 PM. Caleb and I were also exhausted from the day and the worrying about surgery! We ordered in pizza and were able to get our little boy snuggled in for the night! Atticus had a good nights rest, which we were so grateful for!

So we are off to recovery to get rested and ready for the next chemotherapy session to start next week!!!

we had to celebrate his birthday in the hospital.

He didn't seem to mind his birthday in the hospital.

We even had a fellow cancer friend come to visit.

Thanks for all of you support.

This was Emmie's present she got me for my birthday! I love this drawing!