4/1/1999: "Marc" came out of his surgery with flying colors. They think they were able to remove all of the tumor, and right now his neurological signs are very good. He is able to recognize and say "Mom" and "Dad" and that his foot hurts. The pathologist was not able to determine if the tumor is benign or malignant, and the results won't be available for a couple of days. The doctors feel it is benign. They also found a heart murmur, but feel it is harmless. More tests will happen, so please continue to pray for good test results on all his tests. Thanks again.

Today, Sunday, (4/4/1999), there needed to be emergency surgery. He started talking baby talk, then would only grunt...then didn't talk at all. A CT scan showed he had hydrocephalus, again, and it was at a dangerous pressure level. I asked why they couldn't wait until tomorrow/Monday to put in a shunt. They simply said, "He would die." They decided to not wait for transport to take him downstairs, so I carried him down, and then signed the papers. The waiting room was darkened, and most doors were locked. Even the surgeon had to find an unlocked door for us. It was the strangest feeling, so quiet, so dark. I just held onto my son. He was wrapped in his favorite blanket, curled up in my arms. His body seemed stiff, and I could feel his his deep, inner fear. I could hear a faint, low level moan. The nurse came to me, took my son, and tears silently rolled down my face. Time stopped, and so did all sounds and feelings. I don't know what happened after that.

A shunt was put in, and when he woke, he seemed to be so much better.

4/7/1999 "Marc" and I are now home!!! Today we found out that the "things" that showed up in the kidney scan, are cysts...and two, tumors, either an angiomyolipoma (usually benign) or renal cell carcinoma. The tumors are small, so we will wait for 3 months for more scans. There is also a small piece of the tumor left in his brain, about 1 cm in size. We still don't know for sure if the brain tumor is benign, but we're almost positive it is benign. They also found two "things" in the back of his right eye, one is right in the middle of his visual field, so it will be checked again in 3 months. Sooooo, continue to pray.

4/16/1999 "Marc" seemed fine at first, but then he started to throw up, have bad headaches, and his tummy hurt. We almost went back to the hospital. We had our pediatrician check him out and found that he had a bad ear infection. He was put on antibiotics, but then the headaches and vomiting returned. Again, we almost went back to the hospital. The neuro-surgeon was to come to our town the next day, so we waited. Before he came though a CT scan was made of "Marc's" brain, and the radiologist said it looked pretty good to him. When we saw the neuro-surgeon, "Marc" was again doing great. But the next day, he had headaches again and vomiting. So...our pediatrician stopped the antibiotics, and guess what?! "Marc" has had two days with no vomiting, and only a couple mild headaches!! You can't imagine how wonderful it is to hear his infectious laugh coming from the back yard. Praise the Lord. Please keep praying that his kidneys will be okay.

4/25/99 "Marc" woke up with a headache and tummy ache. Later he threw up. His temperature was 100.8 so we gave him some children's tylenol. After awhile he seemed fine. Then, about 1:00 he started screaming that his head hurt. And his tummy hurt again. I took his temperature, and it was now up to 102.8. We gave him some more tylenol, and called the doctor. We have an appointment for tomorrow, unless I get concerned that something else is going on. Actually, I think his ear infection is acting up again.

I stopped writing daily notes until the following:

August 19, 1999 It is so heartbreaking to know the pain my little boy has gone through! About a month ago, Marc started having headaches and vomiting again. He lost about 3 pounds, and that is a lot for a 6 year old that weighed barely 40 pounds. His headaches were so bad that he was screaming with pain. I took him to see our local pediatrician, thinking maybe he just had the stomach flu, and that the vomiting caused his head to hurt. We finally put him in our local hospital, Sacred Heart Hospital, and had a CT scan of his brain. That scan showed that there was a cyst growing, about where the small portion of the brain tumor that could not be removed!! His pain was so bad that they put him on IV morphine, and he needed fluids by IV because of the vomiting. It was quickly decided that he needed to go back to his previous neuro-surgeon at the children's hospital 2 hours away...immediately...and by ambulance. My husband had time to rush home and grab a few things for me, because I would go in the ambulance with Marc. Marc requested that there be no sirens because he couldn't stand the loud sound. He quickly fell asleep, and slept most of the way. The trip actually went quickly because the two ambulance attendents kept me busy with conversation. Before Marc fell asleep, they gave him a small stuffed animal. Unfortunetly, he left it on the ambulance because he was asleep when we arrived at the hospital. Things were in a daze, and time seemed to move ever so slowly.

Our regular neurosurgeon was about to go on vacation for a week, but he stopped by two times to be sure Marc was okay. The IV helped the pain, but he continued to vomit. He couldn't even keep down a pop cycle. He was so precious, and would only complain of pain when he was in severe pain. Otherwise, he would give the doctors high fives and such. But, those times were short and he would get quiet, want the TV off and the blinds closed. Finally, though, he seemed fine. We all decided it was okay to go home and wait for "our" neurosurgeon to get back from vacation. They felt the cyst wasn't big enough to cause any brain damage, and might be small enough that it wasn't what was causing the headaches. Anyway, we went home. He seemed fine for several hours, but then he became quiet, didn't want to eat much for dinner, and went to bed early.

The next morning he said he felt fine, took one bite of food, and said he needed to lay down. Soon, he was throwing up again, and the headaches started again. So...up to the children's hospital we went again. We drove up this time, with poor little Marc trying so hard not to cry. I said to go to rest and go to sleep. He put his blankey over his head and whimpered. Finally, he screamed out, and then quietly said, "I'm trying to go to sleep, but it hurts too bad." About 45 minutes later, we had to pull over to the side of the road, and he threw up all over the car and part outside the car. That seemed to make him feel better, at least he could then go to sleep. By the time we arrived at the hospital, he felt a lot better. It was the most stressful trip by car I have ever taken. Now, comes the part that has upset us so much...problems with a doctor!!

First off though, we have had three other children at the same hospital (one for open heart surgery, one for brain surgery, and another for multiple surgeries including brain surgery), and we have had wonderful experiences with everyone!! So, this new "problem" was very upsetting and very shocking to me.

Okay, here goes. This "doctor"...I'll call Dr.BBM for Bad Bedside Manners...came in and asked me, "Now how many children do you have?" I should have realized he had some pre-conceived ideas about large families, but I just answered, "Thirteen still at home." He then said, in front of Marc, "Now, I just want you to consider this. No one can give all those children all the attention they need. It could be that Marc doesn't get enough attention at home, so this is his way of getting attention. I want you to consider that, because sometimes that is the case." I could just mumble something like, "No I don't think that is the case with Marc. Remember that his headaches and vomiting were the sympthoms that caused our pediatrician to order the MRI which showed the large astrocytoma (tumor)in his brain."

He then turned to Marc and said, "Now, Marc, I don't want you to have headaches. If you continue to have them, I will have to tap your shunt. That will hurt. I will have to take a needle and put it in your shunt. I just want to be honest with you. Now, if you really are having headaches, then I want you to tell me. But, again, if you keep having headaches I will have to tap your shunt and that will be very painful for you." Marc's eyes became huge, and I could see the tears whell up in his eyes. He has been so brave, and now I could only wonder what he was thinking. And, I was furious!!!

After the doctor left, I called our pediatricians and complained, almost cried out to them. I was so upset, I didn't even know if I had a good reason to be upset. They quickly verified that I did have a "right" to be upset. They called the heads of the hospital, and soon another Doctor came in and apologized. He was wonderful!! First, he introduced himself, and gave me his business card. The stress that parents feel while their child is in the hospital causes us to easily forget names. And it is especially difficult in a teaching university, because there are so many different staff members coming through our lives. Anyway, he took time to answer all my questions, and gave my son the respect by believing his pain.

Later, another doctor came in and actually examined my son!! So often, a group of doctors would come in mumble a greeting, look at my son, mumble between themselves, and then leave as a group...almost as if they were connected by an invisible cord. Anyway, this doctor actually touched my son, actually talked with my son, and sat down and talked with me. He encouraged me to ask questions, and would always make sure he understood me and that I understood him. Wow, what a great doctor!! Soon, another CT scan was given. On the way to the scan, Marc threw up. At the CT scan room, he threw up again, then said, "Okay, I think that's all."

The doctors decided to give Marc a shuntogram...which is the shunt tap! Nurses and doctors said that it shouldn't be too painful, maybe like a bee sting at the very most. They also said that if our regular neurosurgeon did it, there would be little pain. Marc though wasn't too sure, especially since he remembered what Dr. BBM said earlier. Our neurosurgeon was still on vacation, but I felt another doctor on the team would do just as well. As we waited for the doctor to come in the room, Marc became more and more scared. It was so hard to get him to relax.

Then...in came...you guessed it, Dr. BBM!! I couldn't believe that he would be allowed to ever talk with us again, but here he was. My trust in the medical team was so high, that I just thought that even if his bedside manners were horrible, maybe he was a gifted surgeon, so again I didn't say anything. But, my worries just seemed to esculate, especailly when Dr. BBM asked the technician man, "Now, do you inject the radioactive dye, or do I do that?" I was beyond shock, and just looked at my son. The tech. guy just said "I do that." Dr. BBM then started to get the supplies all lined up...just like on TV. He quietly said something like, "Does this go here or there?" to the tech guy. Again, I was in too much shock to say anything which is extremely unusual for me!!! Anyway, Dr. BBM put the needle into the shunt, and tried to withdraw CSF fluid from the shunt resevoir (which, he said, would show the needel was correctly in the resevoir). But...nothing could be withdrawn. He took out the needle and tried over and over to withdraw any fluid. He kept "stabbing" the needle into my son's shunt, and my son by then was screaming bloody murder. His whole body was shaking, and it took all my strength and the tech's strength to hold him still.

I finally said, "Does that mean that the shunt pump is not working?" He said, "Oh no. I think it's in the right place. We'll inject the radioactive dye now." As the dye was injected, the results could be seen on the monitor. Dr. BBM didn't know how to read the screen, so asked the Tech. man, "Now, which is the top of his head and which is his shoulders?" The tech. man told him, and Dr. BBM immediately said, "See I was right. The shunt is working. I knew I was right." But, I interpreted it differently, but who was I to say he saw it wrong? I was must a mom.

Marc was given steriods for a day, to keep the cyst from causing problems. I was told later that the Shuntogram showed that the CSF fluid was going from the pump to his stomach, just like it is supposed to travel. But...there was no movement of CSF fluid from the pump to ventricles in the brain and back to the pump. Everyone wanted to wait for the main doctor to come back from vacation, and since the steriods seemed to help, and there was no danger of brain damage, we could go home. Two weeks later we had an appointment with our regular neurosurgeon. Marc was still doing fine, no headaches, no vomiting, and basically back to normal. The decision was made to wait and see if he developed headaches again. He still wasn't sure what was causing the headaches though.

Back at home, he continued to do fine. We had an appointment for 6 months, but I had a strange feeling, we would not have to wait that long to see the doctor again. Marc came to me one day and said, "I sure miss Tom. And I made up a song about him, do you want to hear it." At the time, I was too busy, so it wasn't until that evening that Marc brought up the song again, and said, "Mom, don't you want to hear my song about Tom?" Of course I said. The song was short, but the main words were, "Tom is now free. Tom is now free." I hope you have already read my story about Tom. If not, go to my index/first page and read all about Tom, who died several years ago.

The following Wednesday Marc woke up feeling fine, but by afternoon, he was quiet, and even took a nap. He rarely takes naps, but in the past that is how he would deal with headaches. We didn't even really notice that he had slept for about 2 hours. At dinner he was quiet, wasn't hungry, then layed down in the living room. He started screaming his tummy hurt, and then threw up.

Soon, he started to have a headache. After about 3 hours, he was screaming of a bad headache, and we took him to the doctor. The neuro-surgeon at the children's hospital said to bring him on up. First, though, a shot of imatrex was given to Marc, to see if maybe he was just having a migraine headache. He fell asleep in the office, and we started home to pack for the trip to the hospital. As I was carrying him down the hall, he cried that he had to throw up. We almost made it to the bathroom. He vomited and vomited, but most of the time it was just dry heaves. Again, my heart ached for all he had to go through. Then, he stood up and said, "Hey mom, do you realize you started to go the wrong way to the car." He was right, and we laughed. It was almost as if he were totally back to normal, and that the imitrex had worked. I took him back to the pediatrician's office, and said, "Look at him now." They were amazed, and made a call to the neurosurgeon to see if he really wanted us to go up there that night. The decision was made that the doctor would call me in the morning to see how he was doing.

Things went fine, we went home and tucked Marc into bed. At about 1:30 AM that night/morning Marc was throwing up again, and the headaches started again. That continued until at 6 AM I called the children's hospital. The oncall neurosurgeon told me to bring him right up. We packed our things, and poor Marc got worse and worse. I gave him some Tylenol with codeine, and even though he threw most of it up, some of it must have relaxed him enough to let him sleep most of the way to the hospital.

It is now Thursday, August 12, 1999. Late that afternoon, Marc had brain surgery again. They were going to just put a tube from the cyst to his shunt pump, to have continual drainage of the cyst, but...they also found that the shunt wasn't working, so had to replace the shunt!! Friday afternoon...we were on our way home. At about 7 PM that night I looked out the backyard and saw my son, the brave one, swinging from a rope swing just like George of the Jungle!! I yelled out, "Marc, you just had brain surgery, I don't want you swinging from the rope swing. Now stay off it until your stitches heal up." It's great the way the surgeon operates...instead of shaving the whole head, he just makes a part in the hair, and cuts along the part. There are no bandages either!! The hair is a mess though, because of the blood (little of it though) and the vaseline that is used along the stitches' line!! Today it is August 18, 1999, and he is still doing great. Boy am I thankful there are no headaches or vomiting. We pray for his continued healing, and that he be free of complications. Oh yes, we also found out last month that the tumors in his kidneys have not grown at all!! He will someday need surgery, but for now his kidneys at least are okay.

UPDATE: Feb. 21, 2000.

Oh my...we need prayers again. While Janice was in surgery last month, we had a post-surgical appointment with the neuro-surgeon. We were so excited to tell him Marc no longer had headaches, and he loves to read. We felt he was totally back to normal. The doctor smiled, and said he would go look at the MRI. When he came back, his face was serious, he right off said something like, "The MRI shows that the tumor is growing. It is now about 1/2 inch in size. And...the cyst is huge, almost the size the tumor used to be." Which means the cyst is not draining for some reason into the shunt, and is about the size of Marc's fist. The growing tumor, is the piece that couldn't be removed in April. He then said, "We will try to remain optimistic, but, he will have to have surgery before June. We will have to try to remove the whole tumor." Which means they will probably have to remove part of the healthy brain tissue. For now, Marc is laughing and joyous. One could never tell he has a growing tumor and cyst. Yesterday, though he had a headache and threw-up twice. Hopefully, it is just the flu, but today he is fine. In the past he would have a headache and throw up, but would be fine a couple of hours later. We'll just try to not think of the surgery for now. So, pray for this precious little boy.

March 23, 2000
I haven't written daily for quite awhile, but here is the latest. Today, Marc is running around outside, which is great because in Oregon, we've had an awful lot of rain. Our backyard is huge (property is a little over an acre, right in the middle of town). There are many trees and lots of grass. We have the usual array of kids things: swings, (regular and a tire swing), 2 sand boxes, bars, balance beams, trampoline and a tree house. Even though the backyard slopes ever so slightly, it still gets mighty muddy during the winter. Three neighbor kids help to keep the screams at a high pitch today. There is no way anyone could tell that Marc's brain isn't doing too good. About once a day he comes and quietly tell me, "Mom, my forehead is hot." He just says it matter-of-factly, and goes on doing something else.

Three of our kids attend a private Christian school. We are all blessed that the Church of the lets their school use the church during the week. When the church heard about Marc's need for surgery, the Pastor had the whole church lay hands on him and pray. Marc loves the pastor, and loved being the center of attention. His younger brother, Roger, felt a bit left out. He came up front with us, and pushed his way between my legs so he could watch what was going on. After the service, he went up to several people, until he found one who would listen..."Will you pray for me?" This huge man then prayed for Roger, and boy you should have seen the proud, serious smile on Roger's face!!

Now, I am getting things ready for our hospital stay. Marc and I will leave for the 2 hour ride to the Children's Hospital on Wednesday, March 29, 2000. That day we will see the neuro-surgeon and also he will have an MRI. Marc is so good about the MRI. The tech people are always prepared to give a child a sedative to relax during the MRI, but Marc has never needed one. He always looks so small and innocent, I sometimes think I am the one who needs a sedative. We will spend rest of the day going out for lunch, visiting the huge Clackamas Mall, and of course look for Beanie Buddies and Beanie Kids!! That evening we will visit with our daughter who teaches up there, and spend the night at her apartment. We will have to be at the hospital by about 6:30 the next morning...ick!! My husband will try to make the early morning trip on Thursday, and hopefully stay at the McDonald House that night. It is so wonderful being able to use the McDonald House. There is a huge kitchen for anyone to use, a living room, and each bedroom has a private bath. There is a younger kids' play room, and an older kids' area. One can quickly walk to the Children's Hopsital from there.

Now, for a family our size, there must be several pages of lists of things to do while I'm away. I'm starting those lists now. First, I have a folder on each child, with a current picture, doctor's names, medication if needed, school schedule, emergency numbers, medical diagnosis, insurance info, etc. I then have a master list for the main person at home. My son who is 19, will be home for the 2 days my husband is gone. Two kids who are the most difficult won't be home because they go to a state school for the blind 5 days a week. One older son, who has some emotional problems, will stay with friends. Our church will provide dinners for a few days also.

I then have to have a list of all the things Marc and I need. Whenever I have a child hospitalized, I try to make their room as much like home as possible. I put up a poster on his door, so that everyone will know his name, rather then thinking of him as the patient in room ___. I put up pictures of the family, etc. I also bring things like Marc's: special blanket, a few of his toys especially stuffed animals, favorite video's and CD's (I ALWAYS take Motzart type tapes also), special books (especially ones that are funny), his own PJ's and slippers, coloring books, etc. I also buy a couple of surprises to be given the morning of surgery. Lately, we have been into collecting Beanie Babies, so I bought a Ty Beanie Turtle Buddy. Marc saw one at our airport gift shop, and loved it so much, so I went back later and bought it for him. We also love the Holy Bears, but the one place that sells them in our area stopped selling them. Hopefully, I will find a place in the area of the hospital to find them.

Then, there are the things I need: jig saw puzzles (I never do them except when a child is in the hospital, but it does make the time go by faster), books, magazines, notebook (for my own feelings, but also for questions for the doctor...it is easy to forget questions), medical books (also brings up more questions, ha, ha), address book and other things like scotch tape, shampoo, scissors, finger nail clippers, etc. When I get there I buy a phone card where part of the money goes to the children's hospital. I always bring enough cash for extras (it's amazing how much food I waste, even when I thought I was very, very hungry). I also bring my own bowl, cup, etc. The floor has a parents' room with microwave, refrigerator, etc. but I hate paper cups and foam bowls. Oh, yes, I always bring my own pillow and blanket...the hospital ones are...just not right for my head. I also bring Marc's pillow.

Well, I think I will go now and start on Marc's poster. I will put up some cute pictures of him around the edges, put the words "Marc's Room" in the middle, and let him help pick out some stickers to put in various places on the poster.

March 25, 2000

Yesterday, Marc had a headache and took a short nap on the couch. I'm glad we're doing the surgery this week, it would break my heart to see him go through the horrible headaches again and the vomiting. I finished the posters, and Marc loves them. I also put colorful pieces of ribbon on the bottom edge to make it look real festive. I spent about 2 hours trying to get organized for next week. You can't imagine all the schedules that have to be revised.

Our church has always been so supportive and helpful whenever we've had a child in the hospital. Dinners have already been planned for the two days my husband will also be at the hospital (I'll stay the whole time). Most of the transporting of kids has been taken care of, now I just have to find someone that can babysit from 7AM until about 4:00 PM on Thursday. Hopefully, we'll find someone that can take care of our 3 little ones in our home. If not, then our 19 year old will babysit (but that would mean he would be missing school). I have been making a file with all the kids' names, birthdates, insurance numbers, phone numbers, medication instructions, and on and on and on. It's amazing how long it takes to get it all together!! I am also starting to get all the things layed out that are on my list of "necessities."

I am still having a multitude of feelings, some don't even make sense at the time. I can laugh sometimes just talking about the tumor, or cry at other times. I think two of my older/adult kids are totally worn out with all the stress. Luckily, only 2 act that way, but they are the ones who have kids of their own. They don't talk about or ask questions anymore. I try to understand, they have their own families now, and one is always super busy with her 6 children...they aren't really "responsible" for me...but it still kind of hurts. It seems that strangers, or people whom I didn't think of as close friends...like clerks at stores...have more interest in Marc, and often ask how he is doing, or that he is in their prayers. You can't believe how comforting that is to me. Three of my other adult/kids do seem to understand and support me. The first two just kind of roll their eyes whenever I talk of Marc and the tumor.

I try so hard to keep it together, to be a strong Christian, but it is at times too hard. I must seem very weak to them...imperfect...too emotional. I try to accept their handling of the situation in whatever way is best for them...which means I can't have expectations of their behavior with me. Oh well, I am thankful to God to have such a supportive husband, who accepts whatever emotional level I happen to be on, and even my little ones who have made the cutest pictures for Marc, and say the most sincere prayers for him. I also find it interesting that as I express my concerns, others then feel free to open up to me. We have been able to minister to each other!! What a joy it has been to be given the opportunity to tell of God's love to someone I barely know!!

March 30, 2000 Marc's surgery. I'll fill this day in...later. But, as a summary, the surgery lasted from about 10:00 until 5:30!! There was so much blood loss that they had to give him a transfusion. Even the doctor was surprised that the tumor and cyst had grown so rapidly...and to think Marc wasn't even complaining much!! Children are so amazing. Boy, I need to increase my vocabulary, I seem to use that word quite often, ha, ha.

Post OPT:

LEFT: Marc just coming out from surgery.
RIGHT: This is Marc's scar, the very next day!! His hair is very greasy from the vaseline they used to keep the hair away while they did the...cutting. It's great that they don't have to shave the whole head. In fact, they find that there is less chance of infection when they don't shave the whole head. But, it takes lots of shampoo to get all the grease out. We did find that Dawn Dishwashing soap removed the grease much faster.

April 3, 2000

It feels so good to be home. All during the time at the hospital, the weather has been wonderful. A rarity for Oregon this time of year. My older daughter, Dorothy, visited each day. It was so great to have her there to worry with and even to just eat with. She and her friend were there when Marc had his horrible headache. Poor little Marc, he so wanted to play with them, yet the headache was so bad all he could do was scream at the top of his lungs.

May 25, 2000. Marc continued to have mild headaches, and "hot foreheads" for several weeks, but now he rarely talks about a headache. I know he still has a few, because he will get very quiet, get his blanket, and just sit by himself for an hour or so. Then, he's back up, energetic, and ready to fill our lives with joy again. His reading is fantastic, and when he takes the time, his printing is neat. He is delightful, telling me with words and pictures, that he loves me...maybe 20 times a day. He even says things like, "I am so thankful God had you adopt me." He is so friendly with everyone, and seems to have an extra amount of love that he just must spread to others.

June 21, 2000. Marc continues to do great. He loves to read, and often reads several times a day, just for the fun of it. There has been some changes, though. He has always been loving, giggly, and sweet...but...that has intensified!! It is hard to describe, but he loves attention, from everyone. When he was in a commercial for a swimming belt, he quickly became the favorite. He was supposed to get $30.00, but they made him the star of the commercial, and paid him $75.00!! He was cute, and always willing to do whatever was asked of him. He was so dramatic in everything, he had everyone in stitches. The "director" and even a TV newsreporter, said he should be in commercials...that he was a natural. We have always been against this type of thing, but in Marc's case we might reconsider. We really don't know what the future holds for Marc...we don't know if tumors will continue to invade his brain, or if the tumors in his kidneys & eye will cause him problems. If he loves doing commercials, and being the center of attention, maybe that is what he needs to be doing. And...it would be nice to start him a saving account for the future. We just don't know how to get him into other commercials.

Marc still makes me up to 20 pictures a day, telling me how much he loves me. He makes up songs about loving people, and about God. But, at the same time, he is very sensitive. If I say, ever so gently, "Marc, please do not use those scissors," his lower lip will stick out, and tears will start to fill his eyes. Once, he hurt his toe, and I said, in a teasing way, "Marc, I don't want you to hurt my favorite toe," he started to cry. I asked him why he was crying, and he said, "I thought you were mad at me for hurting my toe." I quickly said, "Marc, I was just teasing you." He then smiled and gave me a hug. When I go places with him, he will talk with everyone who will give him a smile, and then give the ladies a kiss on the cheek. I talked to one of our doctors today, and she said she has observed that frequently with people who have had brain surgery. It seems that our feelings, and reactions are controlled in the frontal lobe area, and the surgery can temporarily intensify our feelings. It will be interesting to see how long this lasts with Marc.

Dad and I will travel 2 hours with Marc, to see his neurosurgeon for the last time...the doctor has taken a job back east. We will miss him dearly. We put so much trust and faith in this remarkable man, and now we are worried we will be unable to trust another one with our son. We also worry about the results of the MRI he will have that day also. When he had the MRI in January 2000, we thought he was doing fine, yet that is when we found out his tumor had grown and so had the cyst. So...I am worried...very worried. He shows no signs of any problems, and rarely has even "kitten" headaches. The only things we noticed, are that he is afraid of heights and his left cheek seems to be a bit swollen.

Marc and his friend the clown. Or should I say Marc the clown and his friend?