For family and friends

Sunday, June 11, 2006

Thurs. 5/11
Adam and I go to watch Kevin and John swim at leagues. Adam knows a lot the juniors, seniors and parents. No one can believe he underwent brain surgery less than three weeks ago until he pulls off his hat and shows them his scar. Everyone says he is just the same.
Patty

Wed. 5/10
We go and visit Dr. Timothy Cloughsey at UCLA. He has a national reputation and we have been anxious to meet him. He agrees with Dr. Murphy about the radiation and wants Adam on Temador (a chemo drug), an antibiotic, and medicines for nausea and digestive problems. He tests Adam's neurological skills and likes the results. He has a straight-forward manor and answers all of our questions. We like him a lot and he says he'll work with Dr. Murphy to see if Adam can do his daily radiation in San Diego. We're to come back to see Dr. Cloughsey three weeks after starting radiation. At Tom Rosso's suggestion, we head to Jerry's Deli for lunch. Adam and I had hit Diddy Riese the night before. There are good things about coming to LA.
Patty



Sat. 5/6

Adam decides to go for a Mohawk with one side of his head shaved, it's a natural choice. All of the boys help me cut his hair and get it just right. After we're done we decide to go out for pizza. Adam spikes up his Mohawk and gets may strange stares from people at restaurant.



Tues. 5/2
Our friend Jeannie Leal gets us an immediate appointment with Dr. Kevin Murphy, a radiation oncologist at UCSD. He tells Adam and I that chemo and radiation are necessary and that the radiation will last for six weeks. Adam says he's up for it and wants to get started, get it over with and go back to school.
Patty





I am devasted and can't believe it. Adam has been the healthiest of all the boys. It's so hard to believe. It will be hard to tell the other boys. Bill and I agree that they will try to pull it together and tell the boys when they get home from school. We tell the boys and they seem to take it well. I don't think it seems real to them. Adam seems so normal. It's surreal to all of us. When our friends hear the news they immediately kick it up a notch. E-mails and phone calls come. Food is delivered to our house. We don't know what we would do without them.
Patty


Fri. 4/28
It's been a long a week but today Adam and I meet with Dr. Waltz. The pathology report should be back and I am keen to know what they found. Everything we have heard from the surgeon suggests that things went well. I am optimistic that the tumor will be benign.

We see a nurse first. Adam is quick to heal and the stitches are ready to come out. Dr. Waltz is running a little late we're told but he comes in a few minutes later. In his office, Dr. Waltz explains that the pathology report shows the tumor may have mixed cell types, a high grade glioma and some evidence of oligodendroglioma. The way he discusses this, in a conversational tone, the words don't make an impact. I have to ask him what grade the tumor is. He says it's a grade 3. Everything I have read to date refers to the WHO scale which is I-IV. I do not grasp the seriousness of the situation - Dr. Waltz has softened the message too much. Adam even asks me how serious this is and I say not as good as we hoped but there are worse types like glioblastoma multiforme. Luckily, I ask for a copy of the pathology report. After we leave the office I get a chance to read the report. Dr. Larry Hansen from UCSD had been asked to consult as Scripps did not have anyone with experience in primary brain tumors. I have since learned that there are over 100 kinds of brain tumors.

Dr. Hansen is very explicit. I found it hard to believe that Dr. Waltz had read the same report. Adam's tumor was diagnosed as glioblastoma multiforme with some cell types that may indicate an oligodendroglial component- a different tumor type. It went on to define the characteristics that indicate a stage four tumor - cells that are highly atypical, many mitotic cells (indicates rapid growth), evidence of new blood vessel formation, and necrotic areas (dead cells in areas that outgrew the blood supply). I asked Adam to go with me to grab some breakfast. We went to the Cafe Americana in Del Mar. Adam hadn't read the report and probably had some of the same questions that I had. All through this ordeal Adam has been great. He hasn't been depressed, instead he wants to move forward. After we ordered I told him that the diagnosis was serious. The pathology report suggested that the tumor was glioblastoma multiforme. I told him we were going to ask for slides to be sent out for second opinions as suggested by the American Brain Tumor Association.

The rest of the day went by fast. I went home and told Patty. This was hard to talk about and hard for her to hear. We decide that we want to send out slides right away. There were two sites that we had heard about, Sloan-Kettering and The Robert Preston Tisch Brain Tumor Center at Duke University. Adam and I went back to the hospital's pathology department to fill out the appropriate paper work to have slides, MRIs, and CT scans sent out. Seperately I wrote a letter to Dr. Friedman at Duke requesting an appointment to discuss different treatment options. During our fact finding efforts we learned that Duke was conducting a phase II clinical trial on a vaccine targeting a cell surface protein called EGFR variant III. Patty and I are commited to finding the best doctors we can and this diagnosis place additional importance on this.
Bill


Tues. 4/25
Adam has to go to the doctor's office to get a couple of loose staples out. He says getting them out isn't nearly as bad as getting them in. Patty trims Adam's hair around his bandage before his shower. Patty helps Adam take his first shower since Friday (thank heavens we have a closet full of Speedos) and carefully washes his cut. After the shower it's time for cleaning the cut and re-bandaging his head.
Patty


Mon. 4/24
Adam is released from the hospital. He is still on anti-seizure medicine as a pre-cautionary measure and he is also still on steroids. The steroids make him have a huge appetite. This is good as he's lost 5 pounds and needs to put on more weight before he starts chemo and radiation. As he is being released from the hospital, Bill is with Kevin at the DMV getting Kevin's license. This is especially hard for Adam as Volvosaurus has been his and his alone for the last four years. Now, Adam can't share Volvosaurus with Kevin, it's Kevin's alone. This bothers Adam greatly.
Patty



Sat./Sun 4/22-4/23
Adam continues to make remarkable progress. The doctors and nurses are amazed at his "normalcy" and his good appetite. We continue to scour the internet for information.
Patty and Bill




4/22/06 Adam is doing really well. He is still passing his neurological tests with flying colors. He doesn't look so good but he is feeling good. First thing in the morning they send in a physical therapist to walk around with Adam and evalutate his motor skills. The physical therapist is about six foot seven and he has to hook Adam up to this little belt in case he falls. Adam is practically running down the hall. The PT has to tell him to slow down. He's eating well and talking on the phone to all his friends.

Dr Waltz is off duty this week-end but the neurology department head is checking on him. They remove the bandages to look at the incision. It is much bigger than I imagined. A couple of spots are bleeding a little and need to be closed better. The doctor has a small stapling system and puts in 5 more staples into poor Adam with out any anesthetic. That has to hurt a great deal but Adam doesn't complain. The drainage tube is not working so they decide to pull that out. Adam says that feels weird. It should, they pulled about 2 inches of tube out of his head. An after surgery MRI with contrast is done in the morning. Adam asks the radiologist about the dye and he gives Adam the paper insert that comes in the box with the dye. Adam reads it and looks over the chemical structure. He says he knows about this from chemistry class. Yeah, proof he paid attention in class.



4/20/06 The first flight from Vancouver gets me in to San Diego around 10:30am. Patty and Adam are already at Scripps Green Hospital. Dr. Waltz is the neurosurgeon, I don't know any thing about him. I meet them in the little neurology waiting room. Adam has fiducials attached to his head, landmarks that will show on the MRI and help guide the surgeon.

Adam is miserable. They have given him steroids to help relieve the pressure but it hasn't helped much. The tumor is bigger than a golf ball and located in his right temporal lobe. Dr Waltz feels the intercranial pressure is dangerously high and wants to operate tomorrow.

Unbelievable.

Some things are going our way. The tumor is in a good spot and appears to have well defined borders. The surgery could remove the tumor completely. As a right hander, Adams left temporal lobe is dominant I'm told. He shouldn't experience any "deficits"

We go home. The surgery is tomorrow at 1:30. An MRI is scheduled and we should plan on being there around 8:30. I have to call my brother and sister and clear my schedule. Patty and I tell the kids that Adam has to have an operation but every thing should be fine. I'm glad they don't ask questions because I don't have any answers. Is Scripps the right place to do this? There isn't time to check. I pay $15 to look up Dr. Waltz on line - no complaints filed and he is board certified. Patty calls friends with medical backgrounds. A co-worker tells me his uncle is a neuro surgeon in Houston and he would be happy to talk with him. This is such welcome news. Patty and I don't know what questions to ask.

Adam is tired. The headache has been severe but the steroids seem to be helping now and he wants to sleep. Patty and I walk on tip toes to make sure he is undisturbed. Around 4pm, some one from Scripps calls and asks for Adam. I explain that he is sleeping, could I help? What follows next is my first frustrating encounter with HIPAA guidelines. As a twenty year old, Adam is an adult with privacy rights. The bureaucrat on the other end of the line informed me that she couldn't discuss this matter with me. I wasn't about to wake him, her suggested solution. Faced with an "unreasonable" person, me, and safe in her knowledge that Adam's privacy was still intact, she hung up.

Unbelievable.

I planned to show up as scheduled. If there was a problem, it would get ugly. Luckily, about 30 minutes later, a nurse with a brain called and through some clever questions found a way to make sure we knew to arrive at 8:30.

4/21/06 We head out bright and early, making our way to the MRI center at 8:30. We are informed that Adam's appointment isn't until 10:30 - time to lose it. As I vent at this poor nurse, she surprises me. Stephanie listened and then made things right. She moves the appointment up. She made a series of calls and found the right people to supply forms allowing us to act in Adams behalf. Stephanie then arranged for witnesses and faxed the signed documents to the records department. She was the first in a series of caring people we would work with at Scripps during Adam's stay.

Adam seems to be handling things well. During a pre-surgery meeting with Dr. Waltz, Adam asks if some one would take a picture of his brain as this kind of opportunity doesn't come around to often. Evidently Adam and his college room mates feel this will be a fabulous conversation piece. As the father of 4 boys, I have seen a few stunts that caused me to wonder what they were thinking - maybe a little confirmation of functional gray matter would be a good thing....

The operation is expected to last 2 - 2 1/2 hours. Our friends and neighbors have immediately rallied to help us. The kids are taken care of and are able to keep to their schedules. The NCA families and coaches have been tremendously supportive. I don't think we can begin to thank everyone for their generosity.

We went to the waiting room and were joined by our good friend, John Garrison. John's dad Richard recently lost a long battle with cancer and he had a lot of information to share with us. Patty went outside to call a few friends on her cell phone. She of course called her friend Shana who always makes her laugh and time does fly when she's on the phone with Shana.

Three hours and seventeen minutes later Dr. Waltz came into the waiting room and said Adam was doing well. He said he thought he got all of the tumor and cyst but the tumor had an enhanced region. We were told we could go upstairs to Adam's room and Adam would be up shortly. When Adam arrived in his room his first words were, "That was the fastest two hours of my life." Patty replies, "It was three hours and seventeen minutes and it was the longest three hours and seventeen minutes of my life!"

Adam's head is extremely swollen but he feels really good. The nurses tell him he can have ice chips but Adam asks for a Sprite. The nurses agree to let him have water. He drinks all of that and asks for more. Soon after, he talks them into giving him a Sprite. By the end of the night he's had Jell-o and pudding. The nurses perform neurological tests every two hours around the clock and Adam is passing with flying colors. Patty heads home to check on the other boys and try to get some sleep. Bill was originally going to spend the night but at about 1:30 in the morning the nurses assure Bill that Adam is fine and Bill comes home to try to get some sleep.



4/19/06 I get a call around midnight - get home. Patty tells me Adam has a mass in his brain. I'm having trouble taking this in, it doesn't seem real.
Bill



4/19/06 We finally got around to getting this up. We've had such wonderful friends and neighbors helping us through this and thought it was important to keep everyone informed. We'll start at the beginning for those who came in the middle of the story. Adam calls me from school saying he has a terrible headache. I can tell he's almost in tears. I ask him if he'd like me to come get him, but he says he's going to sit down for a few minutes and then drive home. I tell him I'll take him to urgent care as soon as he gets here. Adam gets home and before we leave he tells me he's hungry so he eats a burrito (this will come back to haunt me later!) We get to urgent care at 7 pm and of course it's crowded. Adam says his left sinus hurts and we think it's a sinus thing since we know his previously broken nose has not been set correctly. We assume this is contributing to his pain. When we finally get into an examining room, they hook Adam up to an IV with some pain killer and steroids. A while later Adam starts to projectile vomit (remember that burrito!) and I leave the room to go get help. The doctor informs me that the nurses are busy and that there's clean sheets down the hall. I am not a happy camper. Luckily the doctor has wisely ordered a CT scan. That doctor's shift is now over so when we get back from getting a CT scan there's a new doctor on. About 45 minutes after the CT scan, the new doctor walks into the room and as fast as she can speak says, "There's a mass in your brain, you're being admitted." She then leaves the room. She comes back a few minutes later and says she's talked to the neurologist and he's not being admitted and he has an appointment at 10am in the morning. Again, this sentence takes her about 0.8 seconds to spit out. A nurse comes in to take some blood from Adam and I call the boys and Dad. As I say the words to Bill it's so surreal. I tell Bill to get home immediately.
Patty

1 Comments:

Blogger JoArt J said...

Hi, Adam, Patty, Bill and Family,
Art has finished with his treatments and has gone back to morning exercises at the Wellness Center. He is still tired but every day brings a little more energy. We miss our Coaster rides but not the 3:30AM wake-up calls. I hope all is well with you.
Please drop us a line when you have a moment.
Your friends,
Jo and Art

4:07 PM

 

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