Thursday, July 20, 2006

Sam update July 20

Dear Colleagues and Friends,

This is to give a summary report on what is happening with our son. First of all, Dan and I want to thank everyone for their prayers and concerns for us.

* Friday, June 30 - We received the results from an MRI that indicated a tumor of the brain in the left frontal lobe and "something" in the left rear of the brain.

* Monday, July 3 - We meet with the neurosurgeon and surgery to remove the front tumor was planned.

* Wednesday, July 5 - Sam's surgery was successfully done at Florida Hospital Orlando.

* Friday, July 7 - The final lab results were back. It was not benign and not malignant, but in between. The follow up treatment could be 1) monitoring with periodic MRIs, 2) 12-18 months of chemo and/or participating in an experimental drug project.

* Monday, July 10 - Sam is up and walking. He no longer needs the pain medication and IVs, so he can go home. He has not needed even an Advil since.

* Thursday, July 13 - The Neuro Case Conference met; all physicians on the team are in agreement that the follow-up from this surgery need be no more aggressive than periodic MRIs to monitor. Concerning the spot in the back, all on the team were in agreement that it looked so significantly different than the front tumor and they were not suggesting another surgery, but rather to monitor this with the periodic MRIs. This is very good news. No chemo. No second surgery between now and the start of school.

This has been a stressful time of extreme concern, hard decisions and needing the services of medical professionals with specialties that we never wanted to know about.

We are thankful for many things. Our experience at Florida Hospital was the best. It was reassuring to walk in the main door that morning past the huge banner on the building about FH being one of the best hospitals and to have NEUROSCIENCE listed second on the list right after HEART. It was a blessing to be here rather than in Gainesville or Baltimore , Memphis or Minnesota . We were there for 12 nursing shifts and can say they were all "angels of mercy." There are no bad or even marginal stories for us to tell.

Thanks again for your prayers. We have some bold friends praying for the back lesion or whatever it is to JUST DISAPPEAR. You are welcome to join us.

Rhonda and Dan Jeffus

PS: He got to keep his hair. They shaved only a finger's width from ear to ear over the top of his head. Here is a picture from the morning of 7/5/06 .

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Here is link to an essay in Time Magazine about the lighter side of Brain Surgery you might find interesting.

Sunday, July 16, 2006

Quiet Weekend

We have had a quiet weekend. We went to church on Sabbath, there were many hugs for Sam. We had a quiet afternoon then went over to some friends house and watched the video "What about Bob".

Sunday morning Sam and I went to Publix for a few things. We had an Asian noodle dish for lunch. Sam and I watched the F1 race from France this afternoon we mostly slept.

At 6PM or so Sam is going over to Josh's house for a few hours to play games. Rhonda and I are going to go to a movie Water an India movie.

Later.. Josh says everybody is out on vacation so the game night is off.

For supper I fixed Mexican.

Sam is doing fine. Our next doctors appontment is on Monday July, 24.

Thursday, July 13, 2006

Sam Update Thursday July 13, 2006

Yesterday was a quite day. Things are trying to go back to our normal flow. Karla came to visit in the morning, and Josh in the afternoon. For supper Morris and Nancy took us to our favorite Mexican restaurant, it’s at the corner of 436 and 434. Micky and Nancy’s family came to see us at the restaurant for a few minutes. Micky brought us some video to watch. Then when it was time to go Sam went with Ivar for Donnie’s house. Donnie is moving to Tennessee today.

We got a call from the home care nurse as well, she said that if we had any questions about things that were going on she would be able to answer then or find someone that would be able to do that.

Today is the day that the Doctors will meet to decide what the next step will be with Sam’s treatment.

Rhonda Called the Doctor this afternoon about 4:30. Dr. P is still out of town but Dr. O went to the meeting this morning. The have decided that the best course of action following the first surgery is to have a follow up MRI in six weeks. For the second spot in the back of the brain they feel that it is sufficiently different that it is not the same type of tumor if it is a tumor and that it might clear up on its own. So the follow up MRI’s are needed to check any change in this spot as well.

This is all an answer to YOUR prayers. Thanks each of you so much for your continued support in this time of trial.

Monday, July 10, 2006

Sam Update Monday

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We left the Florida Hospital at 2PM. We are home now!

Sam is sleeping on the couch.

Sunday, July 09, 2006

Sam Update Sunday July 9, 2006

We have moved out of PICU down to a regular Peds floor. The doctor has said that Sam can go home if he eats and starts to walk around. He took a shower today and finally got his hair washed.

He had chicken finger and mashed tators for lunch. He is sleeping through the World cup final. Four minutes left in regulation time and tied 1-1.

We had lots of visitors yesterday all the way up till 10 PM. Thanks each and everyone even if you did not get to come in and see Sam it meant a lot to us.

Thanks also to all of our fiends and relatives who are thinking of Sam but are in far away places. We love you all.

Saturday, July 08, 2006

Sam update 7/8/2006 05:00

We were awaken this morning at 3:45AM for a quick trip to get a CT scan. The actual scan only took 5 minutes or so. We left the room at 3:50 and returned by 4:35. He is feeling a little better today than yesterday I believe.

Sam had many visitors yesterday. About 5 minutes is all that he can take. Raining outside most of the day, but the blinds are closed so we don’t notice. There is talk of going home by the end of the weekend, we’ll see as time goes on.

Thursday, July 06, 2006

Sam update Day 2

The clock keeps ticking. We arrived at the hospital at 7AM. Sam had been throwing up beginning about 4AM. Had not been able to hold down any liquid. We went for another MRI at 12:30 PM this one included a full spinal scan. It took 2 hours. The results were good. They have gotten all of the tumor, and no sign of anything in the spine.

We got several calls throughout the day, and several visitors. Sam has many friends around the globe.

He is resting now I sent Rhonda home. I am staying the night then will go home for a few hours in the morning.

Wednesday, July 05, 2006

July 5, 2006

We started the day with a call from the hospital at 6:30 AM saying that we need to arrive earlier than the 8:30 we had been told. This was because Sam had been scheduled for an MRI at 9:30. They were not sure we would have time for the paper work if we arrived at 8:30.We got up and left the house by 7:20.

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We went to the 7th floor PICU. Sam’s nurse was Ashley, there was also a student nurse her name was Rose. We went down to Radiology at 9:00AM on the way we met Kevan Evans. He is working in transportation this summer. He had just at he bottom of the elevator when we were getting off. Sam was glad to see face that he knew. David Garcia was in the MRI room when we arrived there. We also saw Merle there in the hall. The MRI only took about 15 minutes.

We were back in the room by 9:30. They are telling us that surgery is now scheduled for 12:00. 9:30 Dr Selski and Dr. Guedes cam to visit. Dr. Selski is from the cancer institute. They have been looking at the films form the MRI, they are not sure what they are looking at yet. Dr Selski suggests that maybe they should get some spinal fluid so they can test for caner cells before surgery. Dr. P is in surgery now nd they will discuss it with him when he comes out.

Linda Lynch and Owen V have come to see us. Owen was in the room when we returned form MRI. Linda says the most poetic and beautiful prayers. Owen stayed till 11:30.

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11:35 Dr. P arrives he tells us that he has one more case before Sam and we should start around 1:30PM. He tells us that Sam’s incision will go from ear to ear across the top of his head. They will pull down the skin to make the incision in the skull. He also tell us that in 48 hours his eyes could swell shut, this is natural.

Barbara, Sonny, and Don from my work come to visit I went out in the hallway to talk to them. While they are still here Greg Ellis arrives. He went and got his wife and we had a short prayer.

2:10PM the IV pump is beeping again.

2:30 Dr. P and Scott come in to say we are only waiting on an anesthesiologist then we will be ready to go. I signed the consent form that said basically that thing could go wrong, there was no promise that this would resolve the problem, etc.

3:55PM Sam goes into surgery. We are now in the waiting room.

4:45PM Mabiline calls to say that the case has now started. There are a host of our friends now in the waiting room. Jim and Leonie, Dinese Northcutt, Jim Appel, Morris and Nancy, and Merle Peterson. Jim tells us that Josh has called from Australia to find out the progress.

5:05 PM things going well.

5:35 PM things going well. Sonny and Barbara arrive.

6:20 PM things still going well. Karla is now here.

7:00 PM Micky called to find out the status. Joe and Heather have arrived with much needed food, Subs from Publix, fruit, and crackers.

7:10 Greg Ellis calls to get status.

7:30 PM surgery is over.

8:00 PM Dr. P comes out to talk to us. He is very optimistic, but with caution. This is only the first hurtle. They were able to remove the tumor, it was a firm mass which was good, They will not know what it is for a day or two.

9:00 PM we go back to see Sam. He is able to move all of his parts. He is still loopy from the drugs. They ask him his last name and he spelled it for them. His speech was slow and slurred but he could talk and communicate.

9:30 PM we go back to the waiting room. Evar, Stephan, Abby, Matt, and the Gardner’s have arrived. We had one final prayer before we go up to Sam’s room in PICU.

10:00 PM we arrive to Sam’s new room. As they are setting Sam up in the room we see Ellie and Brianna at the door. I go down to let them in. They have brought us flowers and a card.

10:45 Pm I am setting in the room alone with Sam. Rhonda has gone out to call Polly and Suzanne. Sam is snoring peacefully the clock on the wall is loudly ticking away the seconds. Sam’s nurse for the night is Erin. Tomorrow will be a new day. Sam will have a new MRI this time also with a spinal scan as well.

Tuesday, July 04, 2006

Sam's Tumor

This started out as the worst July 4th holiday a parent could have and it only got worst for us. Friday June 30 we received the results of an MRI that Sam had taken on June 16. The Neurologist showed us the x-rays. Sam has a brain tumor. On the front left side of his brain along the midline. The words from the doctor were I’ve never seen any thing quite like this. The Radiologist had called Sam’s neurologist a few days before, he also was not sure what it was. We were told that Sam should go to see a pediatric neurosurgeon. The Neurologist arranged for an appointment on Monday at 3:45. The neurologist thought that they would want to take a biopsy.

Let me give you a little background. Sam is normal young man 16 years of age that is doing fine in school at Forrest Lake Academy; he will be a junior next year. He can’t wait to drive. He is working this summer as a counselor at a summer day camp. He is loved by both the staff and the kids. In the January/February time frame he started to develop these strange body movements. At the time we just thought they were signs of boredom, tiredness, or growing. Over the next few months the frequency and severity increased to the point that we started to take notice. We stopped the ADD medicine in mid-April thinking this may have been the cause. Up until the middle of May, we thought the episodes had gone away. However while on our trip to Hong Kong (May 18 - 29) we were around Sam 24 hours a day and it became obvious that he was still having problems. We called/messaged friends at home for them to get an appointment with a neurologist as soon as possible after we returned home.

Monday July 2 at 3:15 we had our appointment with the Neurosurgeon. He basically told us that we needed to do an intervention biopsy which means that he would go in and surgically remove the tumor. We all turned white. He thought that this was not elective surgery and said that he would have done it last Friday if we had come seen him then. So we are scheduled to go to the Florida Hospital Orlando on Wednesday July 5 at 8:30 AM. They will do another MRI and then the surgery will be on either Wednesday or Thursday depending on the schedule and when we could be fit in.

There is also another spot in the rear of the brain that could be an AVM that will be dealt with at a later time.

Please keep us in your prayers.