The beginning updates

Text updates from Drew from the first week:

September 2
Ok here is the low down.
This past week Ethan has had fatigue, dizziness, headaches, vomiting (only 3 times). Seemed like flu but yet was not normal for Ethan and flu? So after one Dr. Proscribed nausea meds and 2nd dr. Migrane meds and good advice from Aunt Kelly we took him to the ER today and they did a CAT scan.  They found to much cerebral spinal fluid (CSF) in his ventricles and sent us to Childerens Hospital in New Orleans. 

The neurologist (Dr. Green) at Children's has pointed out a growth (tumor) in the 3rd ventricle (the drain for CSF) in his head that is blocking the the ventricle. There are lots of different kinds of growths and at this time no way of knowing what it is. Chances are high that it is nothing serious (I.e. cancer) and it may have been there since he was born. An fMRI will be done Tuesdays morning to see it more clearly. They have given him a steroid and a drug to limit the production of CSF while we wait. It appears the tumor is about a 1 inch in size.

Due to location it is not recommended to be cut out so after the fMRI and a sample of the CSF are analyzed the decision to take a small pice will be made and then best treatment plan will be decided.  It is almost assured that radiation and chemo will be part of this. Quantity and length of treat will not be known till after tests.

Everyone is in good spirits... so far.  Ethan was asleep by the time we talked to neurologist so he is not yet aware of the extent.
This is from drew

September 4
Finished up with Dr. Green about 10 PM. Ethan asleep and Tabitha and I are staying at hospital tonight.

Learned a bit more tonight about the procedure. It is called third ventriculostomy. The main objective is to get a sample of the CSF that is close to Gandalf (the tumor), place a hole directly into a cistern located below 3rd ventricle(this is the new aqueduct) and then if possible to get a piece of Gandalf.  The CSF will be sent off and searched for markers(proteins) that tell what kind of tumor he is. The nickel size hole is only in the skull at which at which point the scope will be pushed through the neurons to the 3rd ventricle. This would be similar to pushing a wire through a bale of hay and does very minimal damage. The procedure should take 30 minutes with the chance of going home by the weekend. The results of the CSF will not be known for a few days. The current speculation by the radiologist is that Gandalf is most likely a Germ Cell tumor or a Pineal Cell tumor. We are hoping that he is of the germ cell family. They are very easy to kill with little radiation treatment. 

The reason for making the biopsy the second goal rather than the primary is the angle at which is necessary to guarantee getting the biopsy would not allow creating the aqueduct, require leaving a visible scar on his forehead and due to the low risk of the procedure it is suggestible to do a second if needed later. The angle that will be used tomorrow is marked by the red lines on pictures. 

There are always risk: short term memory and diabetes(the hypothalamus sometimes releases extra stuff for a while) both of which are temporary and less than 3% chance. This procedure is done over 40,000 times annually in the US. There is a 20% chance the new aqueduct will close itself, however even if that should happen Gandalf maybe be gone and it may not be needed anymore.

September 7
He is home! Last night we brought him home.

He has been diagnosed with a non-gemerminomatous germ cell tumor. There is 85% success rate with removal of these thru the use of chemotherapy and then radiation. The markers indicate that it is malignant but the treatment is basically the same (malignant or not) only increased quantity. 

He will go in this week to start it will take approximately 25 weeks to complete.


September 10
This morning Ethan had his "port" installed in his chest and will be heading home today! He is quite sore!

The port is a tube that runs directly from his artery to a gizmo on/in his chest and is a permanent fixture for the next 6 months. It is located right in the middle, so we now call him Iron Man. (I was hoping for a port model that had cool lights in it just like Iron man, Oh well) This gives direct access to his blood stream is for meds, chemo, blood withdrawals, ect. It removes the need for iv and constantly poking for bold checks.

He will be readmitted for chemo Thursday 9/12 and "Cycle A" will begin. Cycle A consistent of approximately 4 days in hospital; 3 will have chemo administered and 1 to see how he does. Then home for recovery and preparation for Cycle B which is scheduled to start 3 weeks from Thursday 9/12 and will b approximately 8 days in hospital.