|
Welcome to Patrick's web page. Patrick is our awesome 11 year old boy who was diagnosed with stage 4 Neuroblastoma in December 2002,(Inremission) About 2 weeks before his 10th birthday. This website has been provided to keep family and friends updated on his progress. Please join us by helping him fight this childhood cancer by continuing to follow his progress and our fight to beat this! Please visit the guestbook, he would love to hear from you. With Love...the Weismann/Campbell clan :)
Journal
Tuesday, November 1, 2005 12:40 AM CST A YEAR IN THE LIFE OF PATRICK WEISMANN
Friday afternoon in December 2002, I get a call from school.
"Hi Mrs. Weismann...It's Leann from Stevens Creek. I have Patrick in the office and he says he doesn't feel good. Schools almost out, would you like to come and pick him up...Or keep him here and see how he does?"
"Ugghhhhh...He'll be fine, keep him there."
"Okay, I'll call if there is a problem"
Ring, Ring...
"Hi, it's Leann again. Patrick just threw up."
"I'm on my way"
Now I know what your thinking...Bad mom, should've picked him up the first time. Well, I have Mark who would use that "I don't feel good" excuse on a regular basis. And not to mention I did the same once or twice in my day when I didn't want to be there.
Too many times I would let them come home and miraculously they would feel chipper again before we got in the damn front door. So I was wrong this time !!
Over the next few hours, Patrick was still throwing up but never developed a fever. That evening, however, the vomit stopped and a neck pain started. It progressed to severe pain, enough for me to call an advice nurse out of Stanford. She asked why his neck hurt...
"I don't know...he said he fell at school, but that was on Thursday."
"Alrighty then...Give him a cold compress and some Tylenol"
The next several hours brought more severe pain that eventually stopped in his neck and started again in the right side of his abdomen. By early Sunday morning, I knew this wasn't going to go away now and he was in so much pain that he wouldn't move, all he could do was cry.
"Patrick, I'm sorry but we really need to go to the doctor"
"Okay, mom...lets go"
Now carrying him, I rushed Patrick into the El Camino Hospital emergency room thinking, "oh god, I hope it's not appendicitis", which would've been a cake walk compared, now that I think about it.
A CT scan was performed.
CT films were developed.
The doctor calls me in to have a look at the CT film.
He doesn't even need to open his mouth. I can see with my own eyes, that it's definitely not appendicitis. What I was looking at, was a mass so large, it consumed most of my son's abdomen. I just stood there staring at that film in complete disbelief at what I was seeing.
The doctor was speaking to me, I was sure if it because I was hearing someone, but it was muffled. Just like the way the teacher sounded in all those "Peanuts" cartoons.
"It's a mass Mrs. Weismann"
"I see. But when you say 'mass', do you mean....."
(Don't say tumor, don't say tumor, don't say tumor)
"It's a tumor, Mrs.Weismann"
SHIT.
"But what we don't understand is, why he is in so much pain. Tumors don't usually cause pain"
"???"
"Mom, remember on Thursday during P.E. me and a kid ran into eachother on the soccer field by accident and I fell down really hard on my side"
"But what happened after that Patrick? Did you have to go to the office to see the nurse?"
"No, I was crying a little bit cuz it hurt, but after that I was okay"
"Ahhhh...I see" said the doctor. "Now we know what happened. When you fell, the tumor must have bumped into your liver or something and eventually it started to cause your pain."
Ok, now we are up a creek and I'm standing there about to completely 'loose it' in front of the doctor. I knew what I was hearing was bad news. But, I didn't realize how bad until I was told to call my family, because Patrick and I won't be coming home tonight.
"Oh...ok. We are spending the night here and we'll find out in the morning what to do next?"
"No, not here Mrs. Weismann. I am requesting a transport ambulance from Stanford University Medical Center to come and pick up Patrick."
Oh no...Not Stanford University Medical Center!!! Those are BIG words. Fightin' words. He means business now. We are going to "the world renowned hospital," one of "the best of the best." You don't get transferred to Stanford unless something's really bad, so bad that your own hospital can't even help you. I knew at this moment, Patrick was in serious trouble.
I make my necessary phone calls to my mom, my brothers, Jim, Patrick's Aunt Julie, and his Grandpa Bill and Grandma Mary.
"Oh no, Bill and Mary are on a cruise on the otherside of the world!"
Should we call them????? Should we wait until they get home???" I was worried, but left it up to Julie. She knows them better than anyone. Julie made the shore to ship call, but they were out of their room. She left a message for them to call her back. Uncle Ray and Aunt Ellie were with them on that cruise, so that was good. I'm glad she called them, Patrick is their grandson. They should know right away as I would be very upset if no one called me.
Patrick was loaded onto the transport gurney and the ambulance team comes in and introduces themselves to Patrick, who, not thrilled about what is happening, is at least excited that he gets to ride in an ambulance. I try to share his joy in this but, can barely keep myself from breaking down. I'm really scared at this point and try not to let him notice. Patrick has a knack of seeing right through me whenever something is wrong.
"Patrick, I need to have the car up at Stanford, but I'll ride in ambulance if you're scared."
"I'm fine mom."
"He'll be fine with us, Mrs. Weismann"
Good. I can freak out in the comforts of my own car on the way up, make the rest of the necessary phone calls, freak out some more, and I wont be charged the $600 fee for sitting on a bench for a 10 minute ride up to Stanford. The ambulance guys were really great and were cracking jokes and had Patrick giggling before they even left. If you know Patrick, he has never had a problem with being around strangers. I knew he be okay with them.
Lucile Salter Packard Childrens Hospital at Stanford University.
Unload Patrick from the ambulance.
Our room is on 2 north-Oncology.
"Oh no, the oncology ward"
Yes, oncology, better known as cancer. That's the floor we were admitted to, before we even knew if his tumor was cancerous. I was naive for thinking they would just take out the tumor and we would wash our hands of the whole thing.
I knew about "oncology." My dad had cancer TWICE when I was a kid younger than Patrick. I was always the youngest while growing up, so nobody told me much about his cancer as they probably thought I was too young to understand and didn't need to know, or fear I would worry to much...huh, worry? What's that? All I knew was that he had cancer, and that they were keeping something from me and that was it. I had NO idea the severity of his cancer, how it was treated, or for that matter, what his fate was. Looking back, and knowing what I know now, I remember his hair never fell out, so obviously he never had chemotherapy. I was recently told he only had radiation. My dad ended up cancer free but left without a colon.
As a kid, I didn't like that my family never explained my dad's situation to me. I wanted to know and it might have helped ease the blow of what I would soon find out with my own child. So I vowed to always tell Mark the truth whenever he had a question regarding Patrick. You can't lie, it's not fair.
So, here we go through the big doors into the children's oncology ward. I see a little girl walking around with no hair, toting an I.V. pole and a huge smile. I feel so bad for her, kids don't need to go through this...not knowing that days later, Patrick would be living her life.
By now Im thinking to myself, "Okay, We are in the wrong place. We shouldn't be here. We must be on the wrong floor. "Somebody wake me up from this nightmare. Ok I get the hint...something is wrong with Patrick, but tell me we don't have to stay on the oncology ward!!!!"
Her mom trails behind her, guiding the I.V. pole that holds 3 or 4 bags of various poisons known as chemo and about 4 I.V. pumps, looks at me and knows right away it's our first time. She can see it in my eyes, the lost, scared, "deer in the headlights" look. I now know exactly what she saw in me, because I can see it now in the other "new" parents faces. I can pick 'em out a mile away now. You can tell who is new on the ward. A kid that is admitted with a full head of hair has been recently diagnosed or relapsed. That's easy. What's NOT easy is that first night sleeping there, laying down thinking "God, is this really happening to us???" But deep down, new or not they all are wondering, "Why us??" and "Will my child make it out alive??" I know...I'm one of them. Ironically, once I fell asleep, I was out cold until morning as I was so tired from the previous days "events."
The next morning, reality sets in because I wake up but the nightmare is still going on. Damn! I better get some coffee. As I stroll down the hall, past the nurses station, I glance up at the patient board. I'm shocked because it is FULL. "NO VACANCY" A nurse notices me looking at the board and says...
"Oh that? Yeah, I know....it's usually full in here"
We are in the room next to the little girls. I unload our stuff and go back out to meet her. I've never met a child with cancer before, and something was telling me that I better get used to it. Not even realizing just HOW used to it I would have to get until later on. The sweetest little girl. The little girl, without having to say a word, quickly put things into perspective for me. I never knew what became of her, but I hope she beat this 'bitch' of a disease.
Ohhhhh yes....The Childrens hospital. The house of hell for parents. Where a lot of times mom's and dad's have to go home for the last time without their son or daughter. There is some serious shit going on in here. You name it, and some poor kid has it. Parents, relatives, & friends with red, swollen eyes, crowd the ICU room from all over the world, waiting for GOD knows what.
The next few days at Stanford are as follows:
Surgery & removal of "football sized" tumor.......Done.
Biopsy of "football sized" tumor......Done.
Results of biopsy and diagnosis of tumor.....Cancer, Neuroblastoma.
What in the HELL is NeuroBLAHBLAHBLAH???
And HOW is that pronounced????
On top of all that, it had spread, so now it's stage 4 cancer.
"That does it...We are in hell."
And so goes the next several months:
Chemotherapy............Done.
More surgery.............Done.
More Chemo..............Done.
Stem cell transplant.....Done.
Radiation.................Done.
Results:
Bone scan...............negative. GREAT!
Cat scan................negative. GREAT!
Mibg scan...............POSITIVE????. SHIT.
Uh Oh...
Now what? We have done everything.
"Okay Cancer...That's it! We are sick of you and it's getting old now. You and me, in the parking lot....it's ON!"
Our oncologist, Dr. Wong calls up to UCSF medical center for advice from Dr. Matthay, a neuroblastoma specialist. The "Queen of Neuroblastoma" according to him.
Her advice is to start him on a protocol of Accutane, the same stuff that is used in treating severe acne. Six months of accutane. 14 days on, 14 days off.
This has been discovered to mature & kill the remaining cells of certain cancers. Sounded like a long shot to me. But, Im not the doctor, and I will do anything now.
"We will re-scan him in three months after he starts the accutane." Dr.Wong says.
Wednesday January 28th- Day of MIBG scan.
I saw the scan myself when it was being done. I don't know what to look for, but I didn't like what I was seeing. It was different this time. Definitely different from the previous scans. I can't quite put my finger on it, but it just didn't look right. I was nervous during the scan, as he has been through so much and I couldn't imagine him having to do more treatment.
Friday, January 30-2 days after MIBG scan:
I walk into Pediatrics 1 at Kaiser. I want the results. I know the scans HAVE to be ready for Dr. Wong to examine.
"Hi Sherry, is Dr. Wong here? I want to know if he's seen the MIBG results."
"No, he's upstairs doing his rounds... and I don't think Nuclear Medicine has sent up the results yet."
"Well, the radiologist said they would be ready yesterday"
"Ok, Let me go check the computer and see if anything has come in."
She is walking back. I cant read her face at all. Oh, god. Do I want to here this? I want to go home.
"Ok..the scans ARE in. They're clear."
"What?"
"They look good, they're clear."
"Sherry, what do you mean???"
"Come with me to my computer and you can read for yourself"
Holy shit. Holy shit.
In a nutshell, in non-medical terms...
"Scan shows "no evidence of disease"
There it is...the 4 words we've been waiting for. "No Evidence of Disease" A.K.A. - REMISSION.
"Sherry....get out of your damn chair and give me a hug!!!!"
(days later, bone scan also negative)
He did it! He made it! He is CANCER FREE!
Now we wait for the call from Stanford on when his immune system is back from the deep, dark pits of his stem cell transplant. Its been 4 months since transplant and the start of isolation. Four long months which seemed like years, of no movies, pizza parlors, arcades, 7-11, Jamba Juice, sleep overs, friends birthday parties, SCHOOL....and of course TRAIN RIDES!!!! When will the madness end??? Why is it taking so long????? When will my son be free from his isolation sentence???
Then we got the call today...Its Dr. Wong:
"Lori, I've got good news...Patrick's immune looks good. He's free!"
Patrick is free from isolation! YES!
The first thing we did?? Ride Caltrain. Would you expect anything less?
A year in the life of Patrick Weismann, Cancer Survivor.
______________________________________________________
1 Trip to the Emergency Room.....................$200
2 Surgeries after insurance......................$650
7 Rounds of Chemo after insurance................$0
1 Stem Cell Transplant.......................$450,000
(not a typo)
The look on Patrick's face today when I told him he has to go back to school on Monday..............PRICELESS.
Read Journal History
Links:
|
|
