The Waiting Transition

Thursday, March 25, 2010 – Last night Heidi and I waited up for Kellee to come back from Inter Varsity so we could hear how it went. He said it went well and he was glad God could use him to share he experience and to encourage others.  Kellee spoke briefly about his situation and then sang one of his songs, “Come to Me” then he joined the band for about 45  minutes of worship songs. After he updated us, he said if he doesn’t hear from Iowa City by 3:00 Thursday afternoon, he would call. When 3:00 pm Thursday came around he called and was finally transferred to the neurosurgeon who told Kellee the results were back and they did not yield any information about the tumor so a biopsy would be scheduled for sometime next week. This means another MRI to prep for the biopsy. Kellee is excited about another MRI because it means if the tumor has changed (i.e. gotten smaller or even disappeared) it gives another chance to discover any change. So the waiting shifts from waiting for results to waiting for a call to schedule the biopsy, then it will be waiting for the biopsy and then wait for those results. So in the mean time, keep on praying!

Heidi got a call at work today from someone who used to clean her office and who happens to be the grandmother of one of Kellee’s class mates. She had heard about Kellee and wanted to call Heidi to let her know she was praying. Heidi really appreciated the call.

I was just about to post this blog when our phone rang, Heidi answered and I heard her say “hi Gen” and I assumed I knew to which Gen she was talking. Turns out I was wrong, it was the mother of a high school classmate. She now lives in St Louis. She wanted us to know she was praying for Kellee and the family. I asked how she had heard about Kellee’s tumor and she said she had heard about it from her best friend in Iowa who said Kellee was added to the prayer chain she was a member of. It was good to hear from her and we were encouraged to know that the prayer net for Kellee is spreading wide!

So even though we still wait and there are so many unknowns, with all the prayer we are excited about what God has planned!

Tuesday’s Gone

Tuesday, March 23, 2010 – So another day of waiting is in the books. Earlier today Heidi asked Kellee if he was going to call the University of Iowa Neurosurgery clinic to see if he could get some information on the Lumbar Puncture results? He said he didn’t want to call because he wanted to be sure to be in Pella on Wednesday night as he has been asked to be a part of Nine, an Inter-Varsity meeting at CUI. He will be playing guitar with the worship band and sharing a little bit of what he is going through on his brain tumor journey. I was talking with a friend at work who observed the waiting for us is different in that Heidi & I are not waiting on the call to come to us. The call will be coming to Kellee and it changes the scope of our waiting. If the call were coming to us, we would probably have called today to try to find out if test results were ready. Hopefully we will hear some news on Wednesday!

Thursday – Back to Iowa City, 2010

Thursday, March 18 – We left for Iowa City @ 6:45 a.m. to be there in time for an 8:30 appointment in the Neurosurgery clinic.  We checked in at the clinic shortly after 8:30 and were in exam room #12 by 8:40. We were first met by a nurse named Lynn who reviewed with us a packet of information about what we would be doing today and tomorrow. We learned that Kellee would not be admitted to the hospital on today as we thought, but that we would need to be at the hospital @ 5:30 am on Friday.  Next we had a resident doctor come in and go over a few things with us as well. Then and other doctor came in to apply about 10 plastic disks called “fiducels” (fuh-doo-culs) on the left side of Kellee’s head. For about half of them, spots needed to be shaved. These were to be used during the MRI. The fiducels along with the images from the MRI would act as a GPS system for the doctors to perform the biopsy on Friday. Next we went to the MRI. This MRI took only about half the time of the one the previous Thursday and Kellee said the MRI machine was smaller, only his head was inserted. He was poked with needles two times, but he said the person who did it, was good because it did not hurt nearly as bad as some of the pokes last week. (Did I mention Kellee doesn’t like needles?)  After the MRI is was off to the pre-anesthesiology appointment. The doctor there told us what to expect with the anesthesiology tomorrow. Then it was back to the neurosurgery clinic, exam room 3 this time,  to meet with the doctor who will perform the biopsy on Friday.  He told us he believed the tumor was from the  Pineal Gland.  He  then told us he decided to order some more blood tests and it turns out some more tests on the fluid from the Lumbar Puncture, if there was still fluid to test. They were going to see if they could locate the fluid, otherwise there could possibly be another Lumbar Puncture. So, Kellee had to have more blood drawn, another needled stick, but fortunately there was still fluid to test so another Lumbar Puncture was not needed. By this time it was after 1:00 and we were told we had 1-1/2 hours until results would be known. We went to the Melrose cafeteria in the Pappajohn Pavillion to eat a mid day meal. By 2:30 we went back to the clinic. Soon we were the only ones in the waiting room, so I tried to change the channel on the waiting room TV to the NCAA tournament. A nurse behind the counter told me don’t do that! But she changed the channel for me. We just started watching and we were called into exam room #8 to wait for the results. We watched some of the games for nearly two hours and then the nurse came in to tell us the tests were still not complete. She told us we could leave and we would be called with the results.

So we left and went to the friend of Heidi’s sister to hunker down for the night. We planned to order Pizza and watch the UNI game. We had the house to ourselves and the family was gone until Friday for Spring Break. We moved everything in and settled in front of the TV at about 5:00, just when the tournament coverage took an hour break. Kellee and I dozed until about 6:00 when Kellee’s phone rang. It was one of the neurosurgeons calling to say the biopsy was being postponed until next week! There was one more test to be performed on the spinal fluid, but the fluid had to be sent out for testing. They will call on Friday to re-schedule the biopsy, if needed. Our initial reaction was to be a bit upset and question why more waiting, but quickly we realized the is obviously a reason for it and the doctors are doing all they can to prevent the need for the brain surgery.  God has a plan! We had to call Heidi’s sister who was on her way up from St. Louis and tell her not to come, she turned around in Hannibal, MO. We then got back in the van and made are way back home. At least we can sleep in our own beds tonight.

Wednesday – Day 7

Wednesday, March 17, 2010 – This was the day we were told to call if we hadn’t heard anything about the Lumbar Puncture to give them a call. We decided to wait until noon to call. We went home for lunch and suggested to Kellee he call. He did and left a message. It wasn’t until after 4:00 that we found out there were not enough cells to test and we would proceed with the biopsy.

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.