A Bright Black Friday

From Drew:

Ethan is doing good today. He slept most of the day yesterday (Thanksgiving).  He has been up and about for two different wheel chair rides today. One for a CT scan and the other with the PT (physical therapist) He enjoyed them. (Can't remember them.) Dr. Greene said it was due to narcotics.

Ethan still keeps his eyes closed most of the time. Due to the inability to properly focus. When he opens his eyes it's like wearing someone else's prescription glasses and it hurts. This, however, is getting better.  His eye movement is better too.  He no longer has "crazy eyes", where his eyes are out of control. He still has to move his head when looking up (his eyes don't want to move up.) The blurred vision is still a problem but it appears to be improving. While washing his hands he read the sign below. Seemed to make him relieved that he could. It sure relieved me as well.

He has requested and eaten mashed potatoes, part of a donut, and drank some Gatorade.

They removed the drainage tube from the back of his head this morning (that was too cool) and the bandage.  His head looks like the stitching on a baseball and the Dr. offered to sign it- lol.

The Dr. still is keeping us in ICU one more night.  The Dr. wants him up walking and moving about before he moves out of ICU and to regular room.We have learned today (from PT) that for a brain surgery he is actually recovering very quickly. .. THAT would have been nice to know earlier!

Over all things are better today.

Thanks for all the support.

Ethan is doing OK

From Drew:

He just got up to use the restroom for first time. It was a push to get them to let us use the bathroom because he is still so out of it.

They had him on Valium, Benadryl,  and Morphine today.  When neurologist (Dr.Greene) made rounds, he said he couldn't even tell how Ethan was doing because he was so sedated and immediately changed that; which I am grateful for.  We are off all that and down to one med, Toroidal (a kind of a super ibuprofen). He is much more coherent now. :)

Due to not getting a good assessment, we are staying in ICU one more night.

Ethan really can't see much at all.

MRI showed dark and slightly darker areas (indicating differences such as bruising, mild stroke or swelling) around thalamus, (which is a bit of a switch board for most of our senses) and a small area in back of occipital lobe. They are making no promises but say "not something to get depressed about" and they think it will all get better over a couple of months. (???)

Tonight, Beth went home with family to recharge for night.  I am about to go to sleep on a padded 18 inch wide mattress. I'm betting I sleep like a rock.

When the CAT is away (or just sleeping because of meds) The mice come to play.

A couple of Ethans buddys came by to visit.

Morning

Ethan is sleeping at the moment which is good. He threw up about every hour throughout the night. Some of this was expected (any brain injury causes this) but the quantity has been more than expected. He is taking Zofran for nausea, but it has not made any difference. They gave him Benadryl around 9 AM which basically puts him to sleep.

There was swelling in the occipital lobe even before they started so retractors were used and this has most likely caused some bruising of the brain which explains the continued slow pupil reaction (sluggish but improved), blurred vision and the lack of vision to the right field. (They went in on the back left side). This may go away as swelling goes down? (Will keep him on steroids an extra day). Doctors are ducking direct questions about this, so it is my guess they are more concerned then they lead on.

MRI is scheduled for this morning to see what it all looks like inside. This is a regular procedure post brain surgery and they are expecting to see occipital swelling, bruising, and no sign of Gandof (tumor). Hopefully he goes toca regular room (not ICU) after MRI so his younger brother can visit.

The second time he woke he rattled of a bunch of questions like; "where am I? what's going on? what are these tube doing?. ... ect." then fell right to sleep. This let me know straight away he was doing good.

Later he woke and said "well I am alive!"He was concerned that his mom was cold, wanted to watch a movie with Tabi, and asked if his friends had been by.

He did asked for donuts again too. :)

It is expected to be a five day recovery and chemotherapy is expected to start again in 3 to 5 weeks in order to clean up anything missed.

Thanks for all the support and prayers!!

Gandof has left the crainium

Surgery went well today and they were able to get ALL of the tumor. 

Yep ALL of it! It had a hard shell and had "adhesion" to the areas around it but it had not grown into any parts of the the brain. i.e. the brain stem. 

It "looks like" a germ cell tumor and will be sent off for testing. 

Surgery was 4.5 hours and he was under from 8:45 am till 4:00pm. 

He has woken up and cracked a few jokes, moved everything and seems to be doing very well. The only area of concern is his sight is still blurred but as long as it doesn't last over 2 days his vision should be normal.

First comment while waking up was, "Is it over?"

 

The plan

Quick update from Bethie:

"Ethan will have an MRI on November 19, and then the big surgery will be November 26, at 8:30 am.

He will be in the ICU for a while (maybe a week recovery ) if all goes well, we will start chemo a week after.

Drew and I are feeling heavy about everything. Ethan is joyful every day so we choose joy with him.  Jesus joy is our strength."

Gandalf Grows Up

From Drew:

"Funny it seems the more tired we get the harder it is to do these. We are just 2 months into this.

First a quick snap shot of where things are at after which I will fill in details as best I know them and make some corrections to older blogs.

First and foremost lots of questions yet!

We (Ethan, Drew, Beth) sat down with the Doctors (see below) Thursday the 7^th to discuss where things are at. The spine is clear both in tumor cells and tumors. We now have a sub classification of Germ Cell Tumor which is Mature Teratoma syndrome. This is treated by surgery then chemo and radiation. So in the next couple of days we get to give the Doctors a go ahead with this.

Details, remember seems like there are quite a few unknowns yet (to the best of my ability)

The meeting we had with the Doctors (Dr. Velez (Oncologist), Dr. Greene (Brain Surgeon), Shree (Nurse Coordinator) and Emily (Social worker). They had everyone there because Dad (Me) was rather snippy with them earlier in the week.

The terminology that is now being used to describe the tumor and cells is “mature” not “aggressive” however, aggressive may be a trait of mature. So, it is still a Germ cell tumor but they now say, “Mature Teratoma Syndrome” but based on my reading the “syndrome” part is confusing to me yet.  The basics of it are the Gandalf has grown up (mature) so it can no longer be bribed with candy (just chemo) and now we have to use something with more influence (surgery) to affect it. They checked the spine (MRI) for masses and the Spinal Fluid for any tumor cells. I earlier mentioned checking the Fluid for markers and this was inaccurate they were looking for actual tumor cells. Both the MRI and the Fluid are clean which is great news and means it has not spread.

Mature Teratoma is “less malignant” and from what I have read should be benign? This has created confusion on my part because I don’t understand how it can be both and from my research it may not be good but I will ask more about that Monday. I would speculate it ties in to my confusion with the “syndrome”. I think we will have much better answers when we physically get to the tumor.

Another question that will be answered is wither the tumor is just pressing on or grown into the Medulla (Mid-Brain) (see picture)

The Treatment now being suggested:

Surgery first, this will answer many of the questions (hopefully) and to remove as much of the tumor as possible. Then chemo can work and we believe it will due to past germ cell patients and what it did already to lower the Alpha feta protein (AFP).  It was stressed to us that there is not pressure to remove the entire tumor due to its responsiveness to chemo. This also lowers the need for the surgeon to take risks during the surgery. The entrance for the brain surgery will be back upper side, caddy corner to one of the eyes if you will and slightly higher. (see picture) There is a natural division between lobes of the brain here (Optical and Parietal) that will allow them access without having to damage the brain. It seems the biggest risk is moving the blood vessels located close to the tumor out of the way while they are working.

The survival rates are in the upper 90 percentile. Yes still a lot of different potential risk are involved but they are all in the single digit area.

After surgery most likely there will be another meeting of the minds with the new information and a new treatment plan will begin."

MRI results

Yesterday,  Ethan had his MRI.

The MRI showed his spine- Thankfully, the spine was all clear and free of tumors.

Will update soon with next steps...

Heavy news

We took Ethan in for his next round of Chemo on Wednesday, October 30.  Because we had already been through two Cycles, they wanted to take a look at the tumor via MRI. So at 2 pm an MRI was done of Ethan’s head only. As was expected the tumor had grown. Yes, that was expected! Generally, Chemo kills cancer but does nothing to the size of a tumor. It is the radiation that shrinks the tumor. Our radiation was scheduled for after chemo was completed. 

With this current treatment plan, they measure the tumor (after the 2 cycles) and as long as it has not grown over 40%, the treatment plan stays on course. Ethans tumor has grown 45%.  That is 5% too much to continue with the current plan of treatment. This means his cancer is slightly more aggressive then the average Germ cell so we have to be more aggressive in attacking it.

I think it should be noted that his cancer markers are low, which is good sign: at the beginning it was at 13, with our treatment it should be around 9, but it is now at 2 (alpha fetoprotein) I do not understand why they are low and yet it grows, but we'll be asking that!

So what now:

The 2 options that are usually taken at this point are not pleasant. In order to make this decision a MRI will be taken of his spine.(Tuesday, Nov 5)  Germ cell tumors have been known to show up there as well. Then maybe a spinal tap to collect cerebrospinal fluid  (CSF) to check markers there. After the data is collected and looked at they will come to us with some recommendations. It is my current assumption that we will have a sit down with the doctors before the week is out to set up the new treatment plan.

In other news:

Ethan went to friend’s house this weekend which was GREAT!!

Mom and Dad are struggling a good bit with this heavy news regarding E.

 

Chas is hanging in there as usual doing well playing the euphonium.  

Tab is doing great a school and looking ahead (wisdom) planning upcoming vacation.