The Discovery Part 5

Thursday, March 11, 2010 Part 5 – I know what you’re thinking, will this story ever end! Well bear with me, we are getting closer at least to the end of  events on Thursday…

Outside the hospital, I called my son and tried to tell him the news about the brain tumor. I couldn’t talk, The reality of just hit me like a ton of bricks! I somehow managed to tell him about the tumor but we didn’t know anything else. I did not stay on the phone long as the battery was getting low.

Back in room 16, the He was not happy about that at all. have I mentioned he does not like needles? The neurosurgeon came back in and told us that unfortunately due to the shape of my son’s head/brain, etc they could not perform the camera biopsy and would have to do the Stealth biopsy. And since the Stealth biopsy takes more time, they could not work it into the schedule for Friday. However, what they could do a Lumbar Puncture right away. This is a procedure where they take fluid from the spine and since the spine and brain share the same fluid, there is a chance they can get enough of cells to test to indicate the type of tumor. There is only a 15-20% chance this procedure would yield the cells needed to test for the tumor, but if the cells could be found to test it would mean a brain biopsy would not be needed! We would know early next week if there were cells to test. We were told the main side effect of the Lumbar Puncture was a headache. We decided – “bring on the Spinal Tap!” They would still go ahead and schedule the Stealth biopsy anyway just in case there weren’t enough cells and then we would need to schedule the biopsy out from that point.

My wife and I left the room during the procedure. I was we were leaving they told us our son would have to lay flat for 1-1/2 hours after the procedure to help lessen the chance of a headache. By now it was around 4:30 pm. My wife called her mom and I went outside to call my son one more time. This time I was able to talk and tell him about the plans with the Lumbar Puncture. Then my phone battery was spent so I went into the waiting room. My wife had completed her call at the time, so I then borrowed her phone to go out and call my other son to let him know and then I called my two sisters as well. I called them in order of age. Not easy calls to make and I am sure not easy calls to receive.  In talking with my sister we decided not to tell my dad at this point to make sure he would be able to sleep that night. (More about that in a later post.)

When I was done with the calls and went back in the ER they had already called my wife back into the room. When I arrived at the room I was told the procedure went well and our son was laying down resting.  Since my son’s phone was out of battery and we had to wait while he rested/slept I told him I would take it out to the car and use the car charger. The car needs to be running for the charger to work and since we had time I went out to charge the phone and also call my brother.  After about 30 minutes I went back in. A bit later the nurse came in and said we could be leaving soon. The doctor came in and gave us some phone numbers to call in case we needed and if we had not heard any results about the Lumbar Puncture by next Wednesday. We left the ER around 7:20 pm.

The Discovery Part 4

Thursday, March 11, 2010 Part 4 – We interacted with three different people from the ER medical staff when we were in room 16; a nurse, an ER doctor and then the neurosurgeon on call. We spoke to the nurse and doctor first. We shared a bit of the back story and why we were there. At first there seemed to be a bit of confusion as to where the MRI has taken place as they did not seem to have record of it and therefore thought it may have been done at another site. We explained how it was done at the U of I hospital/clinics just earlier that day and the doctor who ordered it told us to come in to ER and he said the MRI records would be sent. They went out to check and shortly came in with the news the MRI results were located and the neurosurgeon would be in shortly to go over the results. The nurse said they would also be taking some more blood for blood tests. When our son, remember he doesn’t like needles, said he already had blood drawn earlier nurse politely told him that blood work was for some eye tests and they would need to draw blood for different tests. The neurosurgeon on call came in and introduced himself but then did not waste any time and got right to the point. He said the MRI detected a mass in the brain…”I thought wait a minute how did it go from some swelling to a mass?” For a moment I almost felt like I was watching a movie, or TV show looking in on a family who receives some information they could not believe was true! Only this was not fiction, he was talking about my son, it was real. It hit me in the gut and I was glad I was sitting down. He explained the next step would be to find out what type of tumor it is. He said a biopsy would give them the information needed to make that determination. Based on the location of the tumor, the doctor said it could have come from one of the following 4 areas of the brain: thalamus, Pineal Gland, Tegmentum (Tectal Plate) or the 3rd Ventricle. Now if I heard him correctly, depending on the area of the brain a tumor can determine the type of tumor and therefore will help establish he type of treatment needed. Evidently there are two ways to do a biopsy, one is to drill a small hole in the skull and insert a small camera and go through the spaces in the brain (where fluid is located) and find the tumor. The camera would allow them to see the tumor and grab a piece of it to take it out for testing. This method is preferred because you are seeing the tumor and know are getting a piece of it but he cautioned us it can not be used on all patients due to the fact that everyone’s brain and heads are not the same size and shape and in some cases there is not enough room to use this method. Our son mentioned “That shouldn’t be a problem since I have such a large head.” Which is true, he inherited it from his father. The other method it to do what he called a Stealth biopsy. This is where another MRI is performed and the brain is mapped out to aid locating where to drill into the skull and insert a long needle to go in and get a piece of the tumor. He said this method is not as exact as seeing it and can sometimes be off my a millimeter either way. “We want the camera method” is all I could think, this is my son and I want the most accurate medical procedures as possible! The neurosurgeon told us we could look at the MRI and see the tumor, so we stood up and gathered around the computer screen. He proceeded to show us a number of different views and sure enough we could see a white mass in the center of the brain. He said it was the size of a peanut, we never asked if he meant a shelled peanut or one in the shell. But there it was, it looked like the size of the Planter’s man to me and not a peanut. I thought, no way this could be in my son’s head! Why? Where did it come from? I felt sick to my stomach and a bit dizzy, I had to steady myself by putting my hand on the counter. The doctor then said he would check to see if there was room in the schedule to do a biopsy next day.  If so, our son would be admitted into the hospital and the biopsy would happen within 24 hours. It was happening so fast! The doctor left and the three of us were in the room by ourselves. Wow, that was unexpected! We couldn’t believe it! We said we need to pray.  my wife and I gathered around our son and laid hands on him and began to pray and ask Jesus to heal our son and remove the tumor! While praying, my mind went back to when he was a baby and we would hold him between us in a “family hug”, life was so simple then! I wanted to end our prayer time with a family hug but the nurse came in before we could get to that point.  She said she was there to draw blood for the tests and that she was going to go ahead and put in an IV port just in case he was going to be admitted. Once again he was not happy about more needles!  My wife and I decided I should go out and call our son to tell him about what we had learned and that we might not be home and he would need to take care of the dogs. So I went outside to call…

The Discovery Part 3

Thursday, March 11, 2010 Part 3 – Our son directed us to the Pita Pit in downtown Iowa City. A place where he has eaten at before when the band has played shows in Iowa City. We ordered our Pitas, 2 Locals and 1 BLT.  We were sitting eating our delicious pitas when our son’s phone rang, the number from which the call was coming was “Unavailable” so he thought he better take it just in case. We sat there watching him as he took the call, we could tell by body language and him saying “OK” a lot that is was most likely a call from the clinic or related to the visit. Turns out the call was from the ophthalmologist telling him something was found in the MRI. It looked like some swelling in the brain. Our son was told he could either come back to the hospital and go to the ER and ask for the neurosurgeon on call to have the MRI results (which the Dr. said he would send to the ER) reviewed with us or we could set up an appointment for sometime later. Since we were still in Iowa City, we said we would go to the ER. I dropped my wife and son off and went to find a place to park the van. Turns out there is a conveniently located lot just for ER, they give you a code to get out.  In the ER our son got checked in and was asked a few questions and then told to wait. At this time it was after 3:00 and we were not going to be heading home for a while, our son said, “the puppies, they will need to go out soon, we better call someone to take care of them.” So I stepped outside to call our son back at home (at the previously mentioned small college) and asked him to go take the dogs out.  Just a note about cells phones, I was a cell phone hold out for quite a while, thinking they were not necessary and a waste of money, But it was nice to be able to call directly to my son (although I did only leave him a voice-mail and then a text) and ask him to take care of the dogs. No looking for a phone to use, hoping we could get a hold of him. Gotta love the cell phones. Another blessing about the cell phone, the doctor was able to call and reach my son and have him come in. Just a few years back they would have called to our home phone and we would not have gotten the message until we got home and we would have had to set up an appointment at a later date. My wife mentioned, “I bet the doctors also like cell phones for being able to contact patients as in our situation.” Our son was called into the ER shortly after 3:30pm, the nurse asked him if he wanted family to accompany him, of course the answer was yes, but we were not sure if mom & dad would be invited as well. We were brought to ER room #16 in which there were three chairs an ER bed and a stool. We each took a chair, not knowing what was to come…