1.5 Days Post Craniotomy

Charlie is now 1.5 days post craniotomy.  We had no idea what to expect after such a surgery.  He doesn’t want to move.  He doesn’t want to eat or drink.  He doesn’t want to take his medication (even for pain).  He doesn’t want to do anything but sleep. He wants it quiet and dark.  Pretty hard to get what he wants in a pediatric intensive care unit, where the doctors orders include 15 minute checks on cerebrospinal fluid drainage, and where babies and young children with serious problems regularly cry in pain.  Charlie is irritable and ornery right now – not really his usual happy self.  “Leave me alone – I need to sleep” he whimpers.  This has had us a little concerned, but the doctors have explained that this is very normal coming out of this type of surgery.  First, between the multiple surgeries to cut the tumor out of his sinuses and the cranial surgery, and the swollen lymph nodes, he is just in a lot of pain.  Second, the brain surgery and associated changes in pressure in the brain cause some changes in personality during the healing process.  In reality, the combativeness and moodiness is a good sign.  We’ll take it.  He is otherwise responding very well to all the testing.  He can move his fingers and toes.  He is making sense when he talks (even when it is ornery), and all the medical and neurological signs are looking good.  We’ve been told this morning that he will move out of ICU and into the Neurotrauma unit today.  His new room will be number 2032.  Still no visitors for a few more days.  We can’t wait until he can have friends again, as visitors really lift his spirits.

Moving out of PICU and into the Neurotrauma Unit

The neurosurgeon (brain surgeon), Dr. Bollo, showed us Charlie’s new brain MRI images.  His review of the before and after images leads him to believe that he got all of the tumor out of his brain region.  The ear nose and throat surgeons also believe they were able to get all of the tumor out from below the brain.  They basically removed all sinuses and everything else from the brain down to the soft palate in the middle of Charlie’s head.  The MRI shows a gaping dark space where the sinuses and nasal tissues used to be.  They replaced the bones separating the brain and sinuses and surrounding the eye orbits.  The rest will be left open.  While his left eye is still not seeing, his right eye is responding well to the surgery, and appears to be healthy.  

Setting up in the new room.

So where are we now?  The attack on this cancer has three prongs: (1) surgery to remove as much of the tumor as possible; (2) chemotherapy (medications) to kill cancerous cells wherever they may be in his body; and (3) radiation (focused energy waves) directed to areas where the cancer has been and may still be (like sinus areas, olfactory nerve areas and lymph nodes) to kill cancerous cells.  The first prong of the attack may now be complete, assuming no new tumors are found, and none reappear.  The doctors are now working to figure out the chemotherapy plan.  There are many different types of chemotherapy medications and treatment plans.  They are trying to figure out the best types of medications, as well as the best way to give this medication in terms of timing and duration.  Within a couple of weeks, the doctors will also formulate the radiation plan.  They had to wait to see how much tumor could be removed.  Radiation is really hard on the body – especially in the sensitive areas involved here - and they don’t want to radiate any more areas than they have to.  We really don’t know right now what the chemotherapy and radiation plan will involve, or exactly how long it will take.  A lot of that will depend on his initial reaction to the treatment.  It is a constantly moving target.  Treat, test, reassess.  All we really know right now is that the treatment will be intense, and involve a lot of time down here at the hospital and the Huntsman Cancer Center.  Beyond that, no one will make any promises.  

Packing and Unpacking Once Again. We will be in the nuerotrauma until he gets the lumbar and head drains out.

We continue to be grateful for your prayers and faith.  We are seeing many tender mercies.  We are feeling the “peace that surpasses understanding” as we learn to trust that our Heavenly Father is in control of this matter.  We have never felt so helpless, and so at peace.  We know our Heavenly Father intervenes according to our faith.  The outpouring of faith in Charlie’s behalf has been incredible, and I know our Heavenly Father has heard your prayers.  We truly feel angels surrounding us – both mortal angels and those from the other side.  We’re so grateful, and our hearts are full.

The Elders just came and asked if we would like the sacrament.  Charlie said yes.  The spirit permeated the room as the Elders blessed and administered the bread and water.  Charlie has not wanted to eat, but seemed grateful for this sustenance.  Another tender mercy.  

-Shaun