Journal History

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Saturday, April 30, 2005 12:35 AM CDT

I havent really updated this web page before but im trying to keeping you updated on things like recent gig pics that I have done with the band. But I have pretty much a normal life. Except the fact that I have to do immunization shots and scans in the future but other than that, normal. Keep messaging I love to hear from you.

Patrick

Thursday, August 19, 2004 7:33pm PDT

*******UPDATE*******
I know I haven't updated this website for some time now. So, here it is. Patrick continues to do so well after completing his treatments. The only thing left to do are all the important scans ( p.e.t. scan, bone scan, and ct scan). He just had a round of scans 2 weeks ago and again, they all came back clear!!

As some of you already know, Patrick was granted his wish from the Make-A-Wish foundation for a trip to the Atlantis resort in the Bahamas. We just returned from that and all had a great time. I will post some pictures here on the site soon. But if you would like to learn more on Atlantis, go to www.atlantis.com. It is a nice place to take kids.

School starts next Thursday. I hope it all goes smoother than last year. We are ready for a fresh new start and get life back in order as much we can. Patrick will be attending a new elementary school this year. I decided it was best for all of us if he went to the school that is right up the street from us. He will be able to walk to school now, as before his old school was 2 miles away and always needed a ride. We are sad to leave Stevens Creek. The staff and parents were so supportive during Patricks diagnosis and treatments. I have known all those people since Mark started kindergarten there. THANK YOU STEVENS CREEK STAFF AND PARENTS!!!!! We promise to visit you!!!!

I know alot of people have been checking here for updates, and I appologize for waiting so long.
I promise when any new news comes up, I'll update! :)

----------------------------------------
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.

Tuesday, January 20, 2004 1:32 AM CST

Well,
I guess it would help if I actually updated this website. I thought I had updated it already when we received the result of Patrick's lab result for his immune study. sorry.

As of 2 weeks ago, part of the tests came back negative. Negative meaning his immune is STILL not up to par. Grrrrrrr "!@#$*" and "!@#$"!!!!!!! It is REALLY starting to piss him off...and rightly so! In a way it's kind of good that he is still in isolation, as this flu season is so horrible. But, now he is begining to really get sick of being home all the time. THANKFULLY, he gets to spend the night at Uncle Bob's alot. That helps break the monotony. I think if he was'nt taking the accutane, his immune would probably be okay. But the accutane is such a vital part in the battle to hopefully rid the cancer that remains . Next week, he is scheduled for all the scans again (i.e. bone scan, MIBG, CT scan). I look forward to all these scans, as I hope to see some better news. In that same thought, I am scared to death to here the results as well.
I have been pretty good at NOT thinking of all the bad things that can be in our future....it's all so real and it can happen to us. But here and there, I can't help but think of how uncertain the future is. On one hand, he can get through this and move on. On the other hand, I have this huge pit in my stomach that screams otherwise. And there is not anyone around who can tell me everything will ACTUALLY be okay, because no one truely knows. Cancer makes it so uncertain for us. I hate this DAMN disease SO much. All for now.

Love, Lori (wanting to cut off "the other hand")

Thursday, December 18, 2003 4:16 PM CST

Hi everyone and Happy Holidays,

Today is day +117 post transplant and Patrick continues to do great. This morning we went to Packard for blood labs, so they can begin his immune study. The test results wont be back until after the new year :( Hopefully it will come back showing a full immune system! However, I was told that the Accutane he is taking can slow down the building of his immune system. If this is the case, he will remain in isolation and will be retested in one month...argghh! We are hoping to beat the odds and get him back to school, to the movies, on the train, and all the other stuff he hasn't been able to do for about 4 months!!!


IN OTHER NEWS...

My first born, Mark William Weismann, is turning 13 next Tuesday!! I can't believe he is a teenager already!!!
And on top of that, Patrick will turn 11 years old on the 28th! What happened? Where did the time go?
***Here's to many more, my sweet boys! I love you guys so much!***

Merry Christmas Everyone!!!!!
Love, Lori

Wednesday, November 26, 2003 8:13 PM CST

Ok...here's the latest,
The MIBG results from lastweek came back positive...yes, he still has cancer. When we first learned he had cancer, it was on his hips, right arm, sternum (chest), and of course in the abdomen (tumor site). Now, scans only show a small spot left on his right arm and abdomen! No more on his sternum or hips!!! YEAH! So, I know we all hoped for a clean scan...but at least we know something worked.

BUT HE STILL HAS CANCER...WHAT DO WE DO NOW?

Our oncologist called a Neuroblastoma specialist by the name of Dr. Matthay up at UCSF Childrens Hospital. She is the best of the best here on the west coast and has formulated most of the protocals for chemo that Patrick and alot of the Neuroblastoma kids are on. Remember the accutane I spoke of that Patrick is currently taking? The accutane is supposed to make the cancer cells act like normal cells, therefore turning Patricks remaining cancer into normal cells.
Dr. Matthay has recommended he stays on the accutane and be re-scaned in 3 months. In that 3 months, we hope the accutane will have taken away the remaining cancer.

HOW ARE WE WITH ALL OF THIS???

We are good! We will take what we can get and we WILL have a nice Thanksgiving despite the results...afterall, I really do have so much to be thankful for. I have a good feeling we will beat this.

HOW IS PATRICK WITH THE NEWS?

When I told him some cancer was still there and that we had some more work to do to get rid of it, he said, "That's ok, I'm not worried. So, can we go home now and make the smores???" Enough said there. (Thank you Jami, for the smore making kit...it works great and the boys love it! We've used it 3 times already!!)

Please stay tuned for more later on. For now, we will enjoy the holidays without too much thought of the cancer.

**********HAPPY THANKSGIVING***********

Love,
Lori, Mark & Patrick

Friday, November 21, 2003 7:45 PM CST

Hi Everyone...
I know I haven't added a journal entry in quite some time. Since things are going pretty good lately and Patrick is feeling great, I just simply wanted to take a break from the website. Of course, if there was any problems or concerns, I would certainly have updated.

Patrick is on day +80 post stem cell transplant!!! December 11th is day +100 and the last day of isolation! Well, actually, he has to have an immune study at Stanford sometime around that day to see what his immune system is up to. We expect(hope)it to be somewhat normal again by then.

Patrick has completed all his radiation a couple weeks ago, and he handled that with no problems! He is now taking accutane for 6 months (14 days on, 14 days off for 6 mos). This is to help prevent the new cells from maturing into Neuroblastoma. Apparently, accutane is also used for people with severe acne.

Where is he now as far as cancer? Patrick is done with all his treatments (chemo, radiation, transplant, etc). Now he is in the process of re-doing all of the same scans he did back when we started. He did the bone scan and a urine test, and those came back clear. Today, he did the most important scan...the MIBG scan. This is the scan that makes us all nervous and has kept our fingers crossed for a "clean" scan. This will be the tell-tale sign of what happens next. Is he cancer free? Or am I going to have a really crappy Thanksgiving? I wont know until next week whether all he has been through has paid off. So, please everyone, this is it, it's crunch time! If you pray, pray like you have NEVER prayed before. If you don't pray, then do whatever it is you do that would send luck our way. We will take any form of wishes or luck.

I wish everyone can see Patrick right now...His hair is growing back so fast! His eyebrows and his INFAMOUS eyelashes are back too! I will try and post some new pictures after Thanksgiving. He is happy and full of energy and back to his old self. Not to mention almost 11 years old already!!!!!!!!!!!! If all goes well with the scans and his immune system, he will return to school after Christmas break.

So, thats it for now...we wait. Hopefully by mid week, I will have some answers for all of you, and I promise I will post results of his scan by Thanksgiving. If you don't see a post, you have my permission to call and yell at me or send hate emails!!! I dont want to keep any of you waiting. You all have been SO supportive and you deserve to know right away, no matter what our outcome is.

STAY TUNED for next weeks results...I may send out an email to you of journal entry notification like I did with this one. I hope you don't mind! Thanks for checking in!!!!

Sunday, October 26, 2003 12:31 AM CST

Hi everyone...
Sorry for not updating sooner....Patrick finally came home on Thursday after getting his new central line. He is feeling great! Not much else is going on right now except his continuing daily radiation, which is also going well. Also, he is now more than half way done with isolation at day +54 post transplant, with the last day being December 11th!!!!!

Mark and Patrick are getting ready for Halloween! No costumes yet, but the front of the house is decorated!


>>>>STAY TUNED FOR MORE UPDATES SOON........Lori

Tuesday, October 21, 2003 12:03 AM CDT

Hi Everyone...
Well, it's 12 days later and Patrick is STILL in the hospital! The doctors removed his "central line" and have yet to put in a new one. The word is now, they will do it on Thursday. So, that means we stay here probably until Friday morning. We were hoping to have all that done and be home already, but they are booked solid with surgeries and could not fit us in till then. And the ONLY thing that is keeping us from going home until the new line is placed, it antibiotics. Apparently, I can't take Patrick home while he has i.v.'s in his arms, and thats how they administer the antibiotics. OTHERWISE....he is feeling perfectly fine. In fact, he has felt just fine the day after we got here. Everything is the waiting game.....and we just want to go home!

Today was his 3rd round of radiation and he is felling great still! And right now, he is in school (here at Packard)until 11:30am...and will go back at 1:30pm.

That is all for now...Please stay tuned and thanks for checking in on us!!!
.......Lori......

Friday, October 17, 2003 1:02 PM CDT

It was one week ago that Patrick was admitted in to Packard with a fever. He was supposed to come home last Monday, but that morning his blood cultures showed there was still bacteria in his blood. So, that means he would need to stay 48 more hrs until blood tests show no infection. They were clear again and we were scheduled to go home this morning. BUT....his blood cultures came back possitive AGAIN...and yes, that means 48 more hours here. If thats not bad enough, the worse news is that his "central line" (the line his chemo is put through and blood taken from) has to be removed. This is common and is sure to be the cause of the infection. It will be replaced with a similar line in his arm or perhaps another central line in his chest later on.

In other news....Patrick completed his first round of radiation this morning! Pretty simple process. Its just like getting an xray...that quick. He will have radiation everyday(no weekends)until aprox. November 2nd I was just about to write that he is feeling fine, but right now he says he feels a bit sick...Break out the Zofran!



That is it for now...STAY TUNED!!!

Sunday, October 12, 2003 11:17 AM CDT

Well...
It seems I spoke too soon. Patrick developed a fever on Friday after noon and it eventually spiked to 102.6' at 11:30pm. That is pretty much an automatic admit to the hospital. So, in he went! Blood cultures done that night were positive showing bacteria either in his central line or somewhere in his blood. His fever is gone now and further blood cultures show no more bacteria. However, he must stay in the hospital until antibiotics are finished. So, he will probably stay here until Monday. Otherwise, he is feeling fine and ready to get home! Lori

Wednesday, October 1, 2003 12:54 AM CDT

Hi everyone!
Just a quick note to let you all know that Patrick is still doing great! He is day 29 post stem cell transplant and no problems so far (knocking on wood). He is happy and living life as normal. Well, as normal as he can during isolation. That's the hard part for him so far....he can't do what he wants the most, and that's go to his train club, or places like Target or pizza joints, etc. etc. etc. Not going to the movies is especially a hard one. There are alot of great movies out right now that he can't see. Boy, was he upset when I had to tell him Mark and I went to see "Pirates of the Carribean" a few weeks ago. But I had to explain to him how it's not fair for Mark to have to go without during isolation. Plus, I figure by the time Patrick is through with isolation, (day 100 is December 12th) most of the movies from summer will be out on dvd. The movie "Holes" was a "must not see without Patrick"....thankfully it was released this week on dvd, and we now have it at home! Great kid (and grown-up)movie to see. All the 4th grade students had to read the "Holes" book last year. Patrick has the book, but did'nt get to read much. Even though he has seen the movie of it, he has to read it at school still(at Stanford).

Mark is doing well, too. Although junior high has proven to be tough, and he's having a hard time with work overload, I am very proud to report he is maintaining a "B" in algebra! Yahoo! He is working hard at getting caught up in his other subjects. He is not in any sports at school yet. I want to make sure he maintains academically first, as the load for him is hard enough. We reserve sports for spring Little League anyways.

As you can see, our website has a new look! Thanks to a new friend I met online through a Neuroblastoma group, we have a customized site! Her name is Kim, and she redesigned it for us. Her son is Kody. Kody has an inoperable brainstem tumor called "Microglioma". To learn more about Microglioma and Kody's story...go to www.caringbridge.org/fl/kodysstory ...another amazing kid with one amazing website! He is a huge "Blue Angels" fan! Gotta check him out!

Before I go, did anybody know what the month of September was? It was "National Childhood Cancer Awareness Month".
Not many people know childhood cancer even HAD an awareness month! It even almost slipped by me. I am ashamed of myself for not noticing the lack of awareness until my own son got cancer. Why isn't it recognized as well as breast cancer? I thought about it...I don't have breast cancer, but I see and hear about it EVERYDAY! I CERTAINLY am NOT trying to discourage breast cancer awareness in any way but, the reality is, childhood cancer awareness is not well known. You all know breast cancer has the pink ribbon...did you know childhood cancer has a gold ribbon? I didn't know that until last month. How many people do you see wearing the gold pin? I know there are awarenesses for certain organizations, like the "National Cancer Society" "The St.Judes Foundation" etc. But the awareness for "childhood cancer" as a whole, is just not recognized nationally very well. Look at Neuroblastoma. One of the most aggressive, nastiest, and least funded of all childhood cancers. Is it because on average, only 500 kids in the U.S. alone are diagnosed with this beast every year?? Have you even heard of Neuroblastoma before Patrick got it? I sure didn't. How about "Microglioma"? Im not even sure I can pronounce it correctly much less know about it until I ran across Kody's site! I would like to think that someday awareness for these kids will be as big as breast cancer, prostate cancer, aids reasearch and even diabetes. I know there are so many others out there and all are equally important, but we need help. Someday, someway...we can do it. After all, these kids really ARE the future. I've met WAY too many (and I really mean WAY too many)families lately who have had to bury their kids and Im sick of it. It's scary, and yes, Im scared. So, I want to work on a fundraiser plan for the near future...Not only for just for neuroblastoma, but for childhood cancer as a whole as well. There are many "word of mouth" fundraisers across the U.S. and some families I know are in the works with a few, but we need national attention. And the best we can do for now is get the word out. If anybody has some ideas for fundraising...let me know. I'll listen to any ideas. One little girl with neurobalstoma started a lemonade stand to raise money, she was even on "The Today Show" with Matt Lauer a couple months ago. That lemonade stand idea is spreading across the U.S. for neuroblastoma awareness and reasearch. Please go to her website at www.alexslemonade.com.

***DID YOU KNOW....
- 1 in 330 kids will get cancer by age 20!
- Over 12,400 kids in the U.S. are diagnosed with cancer EACH YEAR? That's a classroom full of children, EVERY SINGLE DAY, YEAR AFTER YEAR!
-Cancer kills more kids than asthma, cystic fibrosis, diabetes and AIDS combined!

I would also like to talk about a book I came across during our stay at Packard for Patrick's stemcell transplant. It is called "Cancer's Gift". It was written by Donna Breen of Reno, Nevada. Back in 1990, her infant son Kyle, was diagnosed with Neuroblastoma. She gives a very excellent and detailed aspect of what the children endure as cancer patients and their parents (and siblings)endure when their child has cancer. I know you read my journal entrys and get a pretty good idea what we go through, but this book pretty much tells all. You will read of successful stories, and of many families that had to leave Lucile Salter Packard Childrens Hospital at Stanford WITHOUT their son or daughter for the last time. It's a "no bulls**t" story. It's funny, and it's sad. It's real and it's life. Kyle successfully beat Neuroblastoma and is a healthy 13 year old today. I talked to Donna, and she has sent me many copies of "Cancer's Gift". If anyone would like a free copy, please email me at Lori4ups@aol.com.

Now that I have that said....I hope I still have everyone's support when the time comes. I love you all and thank you for your continued support for Patrick. It means the world. ....STAY TUNED....Love, Lori.

"Life is Tough....But I'm Tougher"
-Kody Kruppenbacher, age 6

Friday, September 19, 2003 8:35 PM CDT

Ok Ellie.....Are you ready???????

"WE ARE HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!"

Actually, we got home yesterday afternoon. I apologize for not updating when we got home, but I was very tired as I was running around getting him packed up and his meds ready for home, etc. At about 5pm, we walked out of room 2347 of 2north oncology at Lucile Salter Packard Childrens Hospital at Stanford University Medical Center, the room that he received his final round of chemo (hopefully)and the stemcell transplant that hopefully will stop the demon that has started this hell and headed for home. Then at 7pm, a home nurse had to come over and make sure everything was okay for Patrick's TPN feeding (nutrients fed via i.v.- minus the i.v. pole thank goodness)and to make sure I knew how to hook him up (I had trained for this 2 days ago). Patrick has been on i.v. nutrients since he was admited to Packard. This is to prevent hydration and weight loss during chemo and transplant as the combo of the two deplete his appetite and his sense of taste. He needs it at home for aprox. 2 weeks until he starts eating on a regular basis.

This morning we were back up at Packard for our 1st post transplant check-up and labs (blood test). We will continue appts every Monday and Thursday for labs and SCHOOL! While we are there, he will attend school on the 3rd floor for 2 hours. Since he is feeling good, we thought it was a good idea to start getting ready while he can. I am also trying to see if our school district will fill in some of the gaps for the rest of the week in between Packard class. I think the district provides about the same amount of time that Packard has. Don't worry, it won't be too much too soon. At the most, he will have aprox. 10 hours per week. He needs to prepare for the 5th grade as I anticipate he will get to go back to school in January( X <---fingers crossed).

Next on Patrick's schedule is radiation treatment. I will post info on that when I know more of when it will begin (next month?).

As you know, Patrick is now in isolation at home for aprox. 100 days. He is now at day 17. December 12th is day 100!!! Now, when I say isolation, that doesn't mean he is in a "bubble" in his room or anything. It simply means he is limited on what he can do and where he can go. He is allowed to play outside, go to the park(empty park), car rides and doctor appointments and travel no further than 20-30 minutes from Packard(in case he gets fever, etc). As the days pass, and his immune system returns, his limitations will lift to more activities. These rules are given for infection control. Which brings me to remind EVERYONE to please remember if you visit us, you must NOT be sick in ANY way, or have been in contact with ANYONE who may have been sick in the last 2-3 weeks. Im very sorry...but we have come WAY too far without too many complications so far. And for Patrick to be exposed now, would be tragic and most certainly, LIFE THREATENING!!! I have heard too many stories when people under the same circumstances have died, not from the cancer itself, but from infection. When I say he has no immune system, I mean NO IMMUNE SYSTEM. Zilch-zero-none. The most simple bacteria and infections that you and I come across everyday that we don't even know we get, can and will kill him. So, again please...even if you think you might be sick or others around you may be sick, we will be happy to visit you around day 100! BUT....Patrick (and myself and Mark) would still love to hear from you! Please call, write, or email us...we still love you too :)

For now....Patrick is feeling good! Tired, but good. We are working at getting his appetite back and getting healthy again and enjoying home!

......STAY TUNED...........Love, Lori

Thursday, September 11, 2003 12:44 AM CDT

Good Morning.....
It is September 11th. The 2 year anniversary of the attack on America. I am proudly wearing my American Flag tank top and a "New York City Fire Dept. Hook and Ladder no.9" ball cap, and reflecting on where I was that morning. I'm still sad (and mad)for all the firefighters, police, and office workers inside the World Trade Centers, and passengers on those flights that lost their lives on that tragic day that changed all of our lives in some way.

I, however, am happy to report that the stemscells are begining to graft! This means they are starting to produce NEW blood cells (red, white, and platelets). This is great news as he should start recovering quicker now. His blood counts this morning are as follows:
WBC(white)=0.6
ANC(Absolute Neutrophil Count)=0.2(220)

These counts will continue to raise daily. Patrick will get to leave the room when his ANC reaches and maintains for 48hrs: 0.5(500)

So, we are looking at a couple more days and we can escape this climate controlled room and take a walk up on the roof garden. YIPEE!!!!!!!!

WHEN DO WE GET TO GO HOME?
That all depends on this blood counts, when he starts eating, etc. We expect to be here aprox. 2 more weeks.


***To get a complete and more detailed explanation of stem cell transplants, symtoms and recovery....Please refer to

http://aolsvc.health.webmd.aol.com/content/healthwise/225/74851.htm


Thank you for checking in on us!!! STAY TUNED......Lori

Tuesday, September 9, 2003 8:58 PM CDT

Hi Everyone! It's been 1 week since transplant....and what a week it's been. This has got to be the roughest one yet. My sweet boy was so sick from the all chemo in this 7th round. No meds in the world would save him from "bucket" this time. It seemed as though he was getting sick more than getting sleep. However, the nausea is gone, only to be outdone by severe mouth and throat sores caused by the chemo. He hasn't been talking much at all as a result. He is also on many pain meds and antibiotics that it is just wearing him out and he sleeps most of the day. I have been getting him out of bed to do his daily exercises of basic leg/arm stretches that the physical therapist has given him. We do them together :)


It breaks my heart to see him in pain all the time. I know he is also tired of being here...understandable. We are looking forward to getting out of here and hoping we don't have to stay at The Ronald McDonald House for the 4 month isolation (we are borderline on the driving time (no more than 20min)it takes to get to Packard from home if there be an emergency).

Each day he is getting better and I even catch a wink or smile from him time to time. He is so amazing...in the midst of his worst pain or nausea, he always mutters an I Love You and a small kiss on my cheek. Today, I sat and held him and told him how sorry I am that he has to go through all of this and how I would give anything for it to be me instead. With a tear in his eye, he looked at me with his beautiful eyes (and you know THOSE eyes!) and said "That wouldn't be right...I don't want you to suffer too". A true gem.

So, for now, there you have it in a nutshell. No true words can really describe what we have been through this past week or what may be ahead, but we know we "just do it", no matter what. Wouldn't you?


STAY TUNED........Lori

Tuesday, September 2, 2003 1:35 PM CDT

Hi everyone! Just a quick note to tell you the transplant is DONE! The transplant people came in the room and started it this morning at about 10:45am and were done and gone in a 1/2 hour! Patrick was sleeping when they started, but woke right up due to the odor of the stemcells. We were warned by many that it would smell like like creamed corn....they were right on about that. I was never a fan of(and especially now) creamed corn. He didnt like that at all and was immediately nauseated. But at soon as they were done, he went back to sleep. The whole ordeal was a BIG deal but really uneventful.
So, now is just the waiting game. Let's hope he gets through this with no major problems. :)


Patrick had a good nights sleep lastnight with no nausea. I, however woke up at 3am by the Stanford Life Flight helicopter taking off (the heli-pad is about 40 yards from our room). Never a good sign when you need Life Flight at 3 o'clock in the morning...or at anytime for THAT matter.


I will continue to update on Patricks progress through the week.....So, STAY TUNED....Thanks, Lori

Sunday, August 31, 2003 11:34 AM CDT

Good Morning....It's Sunday now and Patrick finished his chemo Saturday morning. He is now on his 3 day rest until his stem cell transplant on Tuesday. This round of chemo has proven to be the most difficult as he has been getting sick alot. Hopefully he will start to feel better soon, so he can start running his trains again (yes, the train track is here in the room). Also, it would be nice if he could get up to the "Forever Young" room to play some video games. Yesterday, he and Uncle Bob made the attempt to go for a walk, but only made it to the hallway before he started feeling bad again. Maybe today :)

All for now...STAY TUNED....Love, Lori
P.S. We want to thank Aunt Mardee for the awesome train quilt she made for Patrick. He loves it and will only use that now instead of the hospital covers! :)

Thursday, August 28, 2003 2:51 AM CDT

Hi everyone....It's Patrick's 3rd day here at Packard. We arrived here Monday afternoon, and they started him on i.v. fliuds to hydrate him overnight. Tuesday morning, he started chemotherapy. He will continue chemo through Friday. He is feeling good with no problems so far but one minor bout of nausousesness. Just don't mention food around him and he is good to go. After chemo is completed on Friday, he will have 3 days of rest...then the stemcell transplant.

He and Uncle Bob cruised the hospital today and went to visit the "Forever Young" room which is fully equipt with computers, video games, arts and crafts, board games, etc...all donated by the man himself, former 49er quarterback, Steve Young. We heard he sometimes pops in for a visit, so we will have to see if we can catch him. With my track record, he will be there when I'm not, and I can add him to my list of sports figures I've missed out on since we've begun this journey. They also went up to the roof to check out the view. It's a nice place to be, as no one really goes up there because you need a special access code. And if you are really lucky, you might catch the Stanford Life Flight helicopter take off or land about 20 yards from you. Ok...maybe not so lucky for the passenger of those flights, but still really cool to see. It's nice to get him out and about while he can, because as soon as his counts start to drop, he will need to stay in his room.

Here at Packard, there is a teacher that actually conducts a class for the patients (she will come to Patrick's room as his counts start to drop, so he doesn't get exposed to germs). It's only an hour a day, but it's better than nothing.

Mark is adjusting to Jr. High good. He is quickly learning to be more independant in his work and personal life. He rides his bike to school or walks now, something he couldn't do before, as his old school was too far. He likes the independance of THAT part. :) I tried driving him the other day, that proved to be a big mistake. The traffic there is so bad because of the high school and grade school so close by too. Way faster by foot or bike.

Last weekend, Patrick, Mark and Uncle Bob hopped on Amtrak's Coast Starlight train down to L.A. just for the ride, and then back again. The boys were lucky and got to ride up in the locomotive (engine) with the engineer for quite a ways. He has been telling the doctors and nurses (heck, even the janitor I think) about the trip and they are learning ALL about trains real quick here. Mom and Danny stayed in town and hung out in Santa Cruz. I think we all had a pretty great weekend before heading to "Club Packard".

Tomorrow, Aunt Mardee is coming to visit. She has a special surprise for him.

Last, but not least, at this point I want to thank each and everyone for continuing to check in on Patrick and the support you have given. WE STILL NEED YOU, so don't go too far! Please continue to pass the word about Patrick and his fight. We are at a critical point in our fight now, and we need everyone more than ever! Even if it's just a phone call or a journal entry or whatever you have in you. I want to give a special thanks to Jami and Lauren for the dvd's and videos so I (uh, I mean Patrick) won't get bored!! If anyone would like to reach out to Patrick....please do so, to:

Patrick Weismann
Lucille Salter Packard Hospital
725 Welch Rd.
Palo Alto, Ca. 94304

ALSO PLEASE if anyone can write to Mark (Patrick's 12 year old brother) as he needs support too. Write or email to him at:

Mark Weismann
840 Rose Blossom Dr.
Cupertino, Ca 95014
monarchixxruie@aol.com

Thanks everyone.....with much love, Lori
STAY TUNED.........

Tuesday, August 19, 2003 0:48 AM CDT

Hi everyone...I'm sorry I have not entered a new journal entry for a long time, but simply, there has'nt been much to write. However, now there is. The long awaited date for Patricks stem cell transplant is set for this Monday the 25th. He will be admitted around 11:30am and begin hydration until Tuesday morning. He will then start chemo for 4 days, followed by 3 days of rest, then the transplant. He will be at Packard for aprox. 3-4 weeks and then home for aprox. 4 months of isolation.

IN OTHER NEWS....Mark starts junior high this Thursday. This is very bittersweet for me, as I am realizing how fast my boys are growing up. Faster than I ever thought it would happen...*sigh*.

Please, Please, Please continue to check in here, even though I hav'nt written much lately. Once Patrick is at Packard, I will have more to write about. STAY TUNED......Lori

Tuesday, August 5, 2003 1:54 PM CDT

Hi! Not much has been going on since Patrick got out of the hospital. His blood counts are working their way up to normal again. He is feeling good and pretty much back to his old self again. He has a bunch of tests to do before we head for Packard for round 7 of chemo and the stem cell transplant. Yesterday he had a bone scan(no results yet). Wednesday and Thursday he will have the very important MIBG test. It's "pins and needles" waiting for the results for that one, as we haven't known since round 3 what the cancer is doing. By mid next week, I should know results of all the tests and when we go to Packard....STAY TUNED......Lori

Friday, July 25, 2003 11:20 AM CDT

WE ARE HOME FINALLY!!!! After 9 long days in the hospital, we got to go home lastnight! Patricks fever has stayed at aprox. 98' for the last 2 days, and he is eating more. In fact, when we got home lastnight, and I mean right when we walked in the door, he said he was hungry! Yeah! So, now he will rest, get his weight back, and do all the tests and x-rays to prepare for Stanford.....STAY TUNED.......Lori.

Thursday, July 24, 2003 1:34 PM CDT

I have to apologize for not updating sooner. Patrick is in the hospital and has been since last Wednesday. I just wanted to make sure everything was okay, so, I didn't want to write anything prematurely. Last Wednesday night he developed a fever of 101'(anyone on chemo has to go to the hospital to be checked when fever reaches 101'). By the time we arrived at the hospital, it was 102'. He was admited that night and had a constant fever for 6 days straight. Although he felt okay, he was extremely tired as his blood counts had plumeted to zero. The doctor did blood tests, urine tests, etc. All were negative. So, they figure it was just a virus that needed to take its course. He has been given alot of strong antibiotics to prevent any infections that might occur later on while his immune system is virtually gone. He was not eating much at all which has caused some weight loss, but he is slowly but surely starting to eat now. He is feeling pretty good now for the last day or two. Grandma Carol has come to stay with him now and then so I can get out and get some sunshine and do stuff with Mark. Uncle Bob also stays the night every other night so that has been REALLY nice. Its been good for Patrick to have him here too, and has set up the train set here in the room for him. Grandma Mary came to visit yesterday with a deck of Uno cards and I think we played about 8 games. (Ellie....they whooped my butt!!! You better come up here so we can tag team them!!!)

Well, we are hoping we will get out of here in the next day or so. He is REALLY missing home and his own bed.

STAY TUNED...........Lori

Wednesday, July 16, 2003 1:25 AM CDT

Hi...It's been about a week since Patrick completed his last round of chemo at Kaiser. Everything went well and he is home resting. He has been pretty tired for the last two days, and tonight he has a bit of a fever. We are hoping it doesn't get high enough to have to bring him back in. Although he will miss the nurses at Kaiser (and especially YOU VICKI !!!), we obviously don't want to be there more than we need. As soon as his blood counts get back to normal, we will redo all the tests, scans, etc. to see if we are ready for Packard (Stanford) where I've mentioned before, he will have his 7th and last round of chemo followed by the stem cell transplant 3 days after. It will be strange having to get to know a whole new set of nurses again, but we do what we have to do. And if they are half as cool as the Kaiser bunch...then we will be okay :) Plus, the good news about staying at Packard: it's across the street from Stanford shopping center...hmmmm, actually, that could be bad...lol. Hey, I can window shop with the best of 'em!

Okay, this is where I ask a favor to you...we will be at Packard for at least 3 weeks and we will be in need of some entertainment. If anyone has VHS or DVD's that Patrick and I could borrow while we are there, that would be great. We get bored REAL quick in the hospital.

Thank you for your continued prayers and support, and please, like always.....STAY TUNED!.....Lori.........

Monday, June 30, 2003 10:58 AM CDT

Hello!...I would like to apologize for not updating sooner. Patrick got out of the hospital on Friday, 1 week after the surgery. He is doing great and almost back to feeling like his old self. He is eating fine now and trying to gain back the 5lbs he lost while in the hospital. He is doing much better since being at home, playing with his toys and sleeping in his own bed. I finally see the light back in his eyes. :)


Pathology reports came back...everything looks great. The residule tumor they removed showed almost all cancer tissues dead or matured into ganglio neuroblastoma (non-cancerous). There is still a very small amount of "new" tissue but, the good news is, the cancer is definately responding to the chemo!! We are not out of the woods by any means though. We still have the cancer on his bones (left arm, sternum, hips). And as the first MIBG scan (taken after round 3)told us the chemo is responding, it still needs to be taken care of. After round 6 is completed, another MIBG scan will be performed. This is the one we have been waiting for. This will show us whats been going on with the cancer on his bones, as we have not known how much more the chemo has worked on it. This is the test that makes us nervous and on egg shells waiting for the results. I would like to think things are moving along as planned since the pathology from the surgery was a positive step for us. Patrick will go back into the hospital on July 6th for his 6th round of chemo.

........STAY TUNED..........Lori

Thursday, June 26, 2003 11:42 AM CDT

It's now Thursday morning and Patrick is still in the hospital. This second surgery has proved to be much tougher to recover from than the first. A couple of set backs kept us here a few extra days, he has been having stomach problems and we think it may be acid reflux. He will have a chest xray to see whats going on, but this morning is going okay so far. He REALLY wants to go home now. His 6th and final round (hopefully) here at Kaiser, is scheduled for July 6th. Then off to Packard for round 7 and the stem cell transplant.

Mark had a great time at Camp Okizu! He is really glad he went. When I asked him what his favorite part of camp was, he says it's the baseball-bbq party and "inspiration". Inspiration is when the whole camp gets together to discuss their feelings on what they go through having a sibling with cancer. Mark volunteered to go up on stage and talk about what is going on in his life. He talked of his fears for Patrick, his frustrations, etc. He said it really helped to talk about it with everyone. And in doing so, alot of kids wanted to talk with him later that night. He realized he is not the only one who is going through this. He met a lot of great kids and looks forward to family camp at Okizu later this summer.

STAY TUNED FOR MORE LATER.......Lori

Saturday, June 21, 2003 1:27 PM CDT

Hi, and thank you for checking back in on Patrick! The surgery went well and he is doing fine. It is now Saturday at 11:30am and he is resting. He has, of course, some pain which he takes care of with his morphine control button. He says his pain level is between 7 and 10. 10 being the worst, so, the nurses will increase the morphine to make him more comfortable. They want him to pee, and although he wants to and is trying very hard, he is in too much pain. I think a catheter is in his very near future to take care of his bladder. He needs to "take care of business" before he can have water, food, or even go home.


WHAT DID THEY DO DURING SURGERY? This surgery was basically a follow up procedure called "Exploritory Adrinal Laparotomy" (Laparotomy: surgical section of the abdominal wall). They removed several lymphnodes that were left behind in the first surgery. Some containing "old" or "dead" cancer cells. Some even containing new cells. As I wrote previously, they were the lympnodes too dangerous to remove before, due to major blood vessels attached. But after the several rounds of chemo he already completed, they shrunk or hardened, making it easier to remove this time around. They removed pretty much everything (about 95f the bad stuff). What was left, should be taken care of with the remainder of chemo rounds he has coming up soon. Everything else (liver, bladder, other organs) look great and the doctors are happy with the results.

WHERE DID THEY GO IN? They went in through the original scar, making the incision about 3/4 of the original 9 1/2 inches. So, no new scars!!

HOW LONG WAS THE SURGERY? The surgery was scheduled for 12:30pm. They were behind schedule, so, about 2:30pm, he went into the pre-op room where the gave him some "sleepy" medicine. Surgery did not occur until aprox. 4:30pm and was completed at aprox. 8:30pm, counting sew up time. So, aprox. 3 hours for surgery, 1 hour for sew up. He was done and up in his room at 9pm.

HOW WAS OUR NIGHT? Bells and whistles and nurses in and out until about 5am. Enough said. But everything has calmed down now and he is resting well.

A few people have requested our mailing address to send cards. Anyone wanting it can email me at Lori4ups@aol.com Again, thanks for continuing to check up on him.

P.S. Would anyone be interested in getting an email from me, notifying you of "new" journal entries?? If so....please blank email me at Lori4ups@aol.com. so I can receive your email address. Thanks........Lori

Monday, June 16, 2003 6:38 PM CDT

Hi All.....
Wow....nothing is ever set in stone...even when living with cancer. After all the blood tests to see if his counts are good for round 6, the doctor has decided that we just need to give Patrick's marrow a rest. Instead, they have decided to go in and do a little surgery first. Back in December, when the first surgery occured, the surgeon had left a bit of a lympnode with residual tumor (about as big as 2 sugar cubes)as it was too dangerous to remove due to major blood vessels attached. They will check it and see what they can remove. The cells may be active, or it could of shriveled up...we don't know yet. They will also be able to tell whether how much the chemo is working on it or not. They will perform the surgery in the same incision as the first, although not as big...about 4 or 5 inches wide, instead of the 9 1/2 inches like the first. The big day is this Friday the 20th at aprox. 12:30pm, and he will be home by Sunday. Round 6 is scheduled to occur sometime after the 4th of July. Wish him a fast recovery!!! Mark left this morning for Camp Okizu where he will be until Sunday. It's a camp up in the Oroville area built especially for oncology patients and their families. He is attending the "siblings" camp week, no cancer patients. There is lakes to swim, archery, fishing, hiking, etc. It's a place where the siblings can go and be with kids who are going through the same thing. I hear from other kids that it's a lot of fun! Patrick will go at the end of July (if he's done recovering from chemo). The camp is fully staffed with R.N's that know the daily "routines" they oncology kids have. Then sometime before the summer ends, we will all go to family camp. I look forward to that.



Mark is finally done with elementary school!! He had his 6th grade graduation last week and as I sat there, I couldn't help but think of all we have all been through over the years and how hard he worked. I thought back to when he was so little, getting into my lipstick, running after him so he wouldn't fall and hit his head on the corner of a table, all the cute art work he did at school over the years that I hung proudly on the wall (sadly, that ends around the 3rd grade moms!), and school singing programs, taking him to the park...etc. Now, I must shove my oldest son into the 7th grade...better known as JUNIOR HIGH. That place where they will learn most of the things we don't want them to know about just quite yet, and I'm talking from the other students!!! It's where they'll want to be with their friends more than their families. It's wood shop, metal shop, drama, even cooking classes. It's math I don't even remember doing when I was there. It's dances with giggling girls where some look like they should be in highschool, (I was going to write about endless phone calls, but that already started in the 6th grade). Even though he thinks he has the world figured out already...I can only hope he grows to be the fine young man I want him to be. .......Lori.......P.S. Check back after Friday for an update on Patrick's surgery. Also, Love and thanks to Anese and Jami for reminding everyone they know about the website! What a surprise for Patrick to see all the new guestbook entrees! Yes, he reads ALL of them!!! And thanks to all the rest of you out there who continue to pass the word about Patrick! Even though we don't know alot of you...we appreciate you just the same. :)

Tuesday, June 10, 2003 10:57 PM CDT

It's now Tuesday...and Patrick is still NOT in chemo yet. It seems his white blood cells have dropped a bit. Everything has to be 100% to start him up for round 6. So, now we wait until Thursday where he will get another blood test to see if his counts are back up. Hopefully THEN he will start round 6. He feels fine....just wants to get this overwith. Meanwhile...Mark and the REDSOX are done with baseball placing 3rd in the whole league! Those guys played hard and had a great year. Next year, Mark will skip majors and go to junior league. Much bigger field and faster pitches.

Well, here it is. Mark is wrapping up the last few days of school. I can hardly believe my oldest son is headed to junior high. He is growing up so fast, yet, I'm scared to let him go. Arghhhhh!!!!!!

Although Patrick has missed most of the 4th grade, he will continue on to the 5th grade. With a little extra help, his teacher says he should be fine. Hopefully, he will be able to attend once the stem cell transplant is complete. Even though he loves his trains, he definately is ready to be back at school with his friends.

Check back in a few days for more updates.....Don't forget to drop a note in the guestbook for Patrick...He still reads them!!! Thanks! :)

Wednesday, June 4, 2003 10:26 AM CDT

Hello.....First of all, I want to thank Wendy for shooting out that awesome email to all her friends and family reminding them to check the site and continue to pray for Patrick. For those of you who don't know her, she is one of my best friends since the 1st grade. Although she lives in Redding, and we don't get to see eachother as much, she has been there for me through thick and thin. I LOVE YOU WEN!!!

Patrick is still doing great since last weeks incident. Round six chemo was scheduled for this past Monday, but with the recent setback, it is know set for this Sunday.

IN SPORTS.....Mark and the rest of the REDSOX won their 2nd tournament game last Monday!!! They go on to play this Saturday at 9am at Faria school. It's good stuff...come out and watch!!!! ........Thanks for checking in.....Lori

Sunday, June 1, 2003 9:05 AM CDT

It's Sunday morning now....and we are OUT OF HERE!!!! Last you heard, Patrick had received the NG tube. Once that was inserted, he was afraid to move around fearing it would hurt him. Although he quickly got used to the tube, he was very sad. He felt as if he lost his great record of doing so well through all he has been through since day 1. Although this ordeal the last few days was scary for me, It ended up not so bad after all. The blockage in his small intestine had deminished over night thanks to the NG tube which suctioned most of it out. By the next morning, Patrick was totally himself again!!! No pains, vomiting, nothing. We were all happy when he said he was passing gas (of course, "passing gas" were not the words he used). This meant that things were moving along "down there". Late Saturday morning, the nurse removed the NG tube and my boy was back!!! I was not present for the tube removal,(uncle Bob was...I'll let him share details, he's so much better at it....lol) however, I got a phone call from Patrick telling me the news. I almost cried, as I hadn't seem him so happy for a few days now. Im happy too, I really thought things were going to turn out a lot different as of 3 days ago. The doctors were throwing the idea of surgery around. The good thing about the doctors...the ask for other doctors opinions first. After xrays and Ct scans, it was obvious to them surgery was not necessary. Which made us really happy because, today is our day to go to the Giants game. J.T. Snow has a program for cancer kids every Sunday home game. The kids get to meet him and hopefully some other players..(Barry Bonds). The can't guarantee we will meet any other players...(Barry Bonds), but hopefully we can track some down...(Barry Bonds). Me, myself, would like to meet that guy that plays left field....Oh...whats his name!!!??? Anyways, I'll think of it later. :)


IN OTHER NEWS......Meanwhile, during all this hospital stuff, Mark had his first tournament Little League game on Saturday. I'm happy to report that his team won, and they advance to game 2 on Monday June 2nd. Game starts at 5:30pm upper field at Kennedy (fully stocked snack shack, with hot dogs even).


So, for now, ours lives are back to a semi- normal state. My boy is happy again, and I need to get him up and ready for our big day at Pac Bell Park.


He was scheduled for round 6 chemo tomorrow (Monday June 1st) but with this last ordeal here, it will be delayed....STAY TUNED.....Lori

Thursday, May 29, 2003 3:02 PM CDT

Well, I guess I forgot to "knock on wood". Patrick has had stomach pains and vomiting since late Tuesday night. Today I admitted him into the hospital where he will stay for observations until after his CT scan tomorrow morning. The doctor wants to hydrated him and just make sure he is okay. Patrick (and myself) are very tired, as we didnt get much sleep the last 2 nights due to the pain. He has been dozing in and out for most of the day already. He is scheduled to have an xray anytime now. MORE LATER......Lori
THIS JUST IN.....Xrays came back. A doctor came in to tell me Patrick might have a blockage (usually caused by chemo called Vincristine)in his small intestine. Then he told me a surgeon and Dr.Wong will look further into the xray to determine whether surgery is needed. Oh great. Or, the problem may turn out to be that his system is not moving things along as well as they should, therefore causing him to vomit. In that case, Patrick may have an NG tube (commonly used for patients who can't eat)inserted through his nose which will lead to his stomach, then a suction will empty out whats left in his tummy(causing the vomiting to stop). On the brighter side, if the tube IS needed, the infamous "contrast" drink he will have to take before his CT scan tomorrow, can be ingested via that tube. Dr. Wong just now came in and said they will watch him more before deciding on which is best. He thinks it's not bad enough to do surgery. I think they are leaning towards the tube more. I guess I'll find out more in the morning. STAY TUNED........Lori
UPDATE AGAIN.....It's 11pm, and Patrick got the NG tube. And booooy, he hated that!!! Took him about 10 minutes to get used to having the tube down his throat. Nothing a little Benedril couldn't take care of. I must give a lot of courage to him, though. If it were me getting the tube, they'd have to tie me down. Anyways, that takes care of the "contrast" shake for tomorrow. STAY TUNED........Lori

Thursday, May 22, 2003 11:07 PM PST

Patrick has been doing fine since his last round of chemo. He is scheduled for a CT-scan May 30th, to see if there are any signs of a returning tumor. We don't expect to see one, but again, is protocol. He won't have the MIBG scan (tells us what the cancer is up to) until after the 6th round of chemo. I look forward to that test, yet I'm scared of it at the same time. I can't believe it has been almost six months since ours lives changed dramatically. Sometimes I can't help but think where we would be right now had we not found the tumor back in December. Patrick has been so courageous and strong and brave. Braver than me, thats for sure. If you ask him what the worst thing about all this is, he'll probably say it's the "banana shake" contrast drink he has to choke down in 30 min. before CT scans. You would think he saw a skull and crossbones on the label. He reminds me of Calvin from "Calvin and Hobbes". That look he gets when he's disgusted. Otherwise, everything else has become pretty much routine...which is just fine for us. All for now, Lori

Sunday, May 11, 2003 10:24 AM CDT

HAPPY MOTHER'S DAY!!! Patrick got out of the hopspital Friday night. He had a bout with vomiting early that morning about 4am to 7am. Otherwise, everything else went good.....again. Dr. Wong gave him a 2 hour pass to leave the hopstital later that morning, so that he could attend his schools annual Walk-A-Thon, where he got to hang out and "mist" all the walkers with a water bottle as they passed him, so they didnt overheat. He had a great time seeing all of his classmates. And all the kids were happy to see him there! We try to pop in to see the class every now and then. I think the kids like to see for themselves that he is okay. Their own "visual validation". After, we returned to the hospital, our tired Patrick took a long nap and finished his flush (they basically run fluids through him to "flush" out the last remaining chemo so that it doesn't sit in his bladder). Today, we head to the American Cancer Society "Courageous Kids Day" At Great America. We'll let you know how that went later on.....In sports....Mark had a great game on Thursday. He's not letting to many kids make it to first base. He made a great out catching a line drive. The team is really working great together this year, despite almost having to split up the team. All for now....Lori

Monday, May 5, 2003 9:10 AM CDT

Okay....Today is the day Patrick finally heads in for round 5 after a couple weeks delay. The delay was due to his platlet counts being a bit too low, then when those were okay, his white cells decided to join the game by dropping a little too! As I've mentioned before, the doctor want's to make sure he is in tip-top shape before starting chemo. Everything is good now, so in we go this evening. In the news....This is the morning Patrick has been waiting for a long time, he boarded Caltrains new "Baby Bullet" locomotive. He has been riding the train for fun alot these days, but has never been in the locomotive(the engine). He started at the San Francisco depot and helped drive the train ending up at Tamien Square (San Jose). In sports news....Mark is still playing for the Red Sox, however, rain has delayed last Saturdays game against the Giants. Last week playing the Dodgers, Mark had to have a "pinch" runner, as his right knee has been giving him trouble. Thanks to Josh LeFevre for pinch running for Mark....you did great! Becky LeFevre (Josh's mom) told Mark to take ibuprofin 3 times a day, ice his knee when it hurts, and wear an Ace bandage during the game. But we decided to get it checked out by the doctor. The doctor said to take ibuprofin 3 times a day, ice his knee when it hurts and wear an Ace bandage during the game, Hmmmmmm. In entertainment news.....Lori gets to go see Tim McGraw on Tuesday! But the most fun will be Mothers Day!! The kids and I will go to Paramount's Great America for the "Courageous Kid's Day", hosted by the American Cancer Society.....Stay tuned for new pictures soon. All for now.......Lori (p.s. Patrick's room phone # at the hospital is (408)236-4824)

Monday, April 28, 2003 11:13 AM CDT

It's Monday...today Patrick will go to Kaiser for a blood culture to see if all his counts are high enough to start round 5 chemo. Lastweek, everything was good, but his platlets were a bit low, otherwise he would have started chemo then. If all goes well with this mornings blood, he will probably be admitted tonight. We like when he goes in on Mondays, it means he is out by the weekend! Keeping our fingers crossed that this round is as good as the past. FYI...he will be retested after this round again (MIBG, CT-SCAN,etc) to see the progress. Double fingers crossed for those tests! I'm going to get new pictures on this site, so be sure to check back soon!! ......STAY TUNED......Lori

Friday, April 18, 2003 1:30 PM CDT

Patrick continues to handle the chemo pretty good. Since his last round, he is working at getting his immune system back up to where it should be. So, I am still giving him his GCSF shots everyday. However, last Monday, he developed a fever of 101.3' (protocal for chemo patients is to be admitted into the hospital when they get a fever of 101' or above)so, in he went that evening. They administered fluids, antibiotics and had 2 blood transfusions, as his "white" counts were way low. By Tuesday morning, he was back to himself again. Amazing what a couple of ounces of new blood will do. He stayed in until Wednesday morning so they could keep an eye on him and finish antibiotics. His next round of chemo is scheduled for the last week in April, not next week as we were told. Mark will be off all next week for spring break. So, we will get to enjoy a week of rest before Patrick goes back in. Following this next round, will be when he gets retested, scanned, x-rayed, etc...where hopefully, we will see more improvements.
Patrick wanted me to write in here to tell everyone to visit his other website (www.trains4patrick.com). There is a new picture up that he is very proud of. It's of him standing next to the brand new Caltrain locomotive, "Baby Bullet". He and Uncle Bob went to the unveiling ceremony up in Burlingame. So, go check it out :) .......STAY TUNED.....Lori

Tuesday, April 8, 2003 12:57 AM CDT

Quick update........Patrick continues to feel good after round 4. He hasn't been as tired as the previous rounds. Perhaps his body is getting used to the chemo. Yesterday was pretty exciting as the American Cancer Society met with us to interview Patrick and take pictures of him for their "2004" calendar. I will let you know whats up with that when the time comes. Mark has a baseball game Wednesday @ 5:30pm @ Kennedy (upper field)for anyone who would like to come out and watch......Lori..........

Friday, April 4, 2003 10:05 AM CST

Today is Friday...and the last day of round 4!!! Patrick will get to come home at 12:30pm. This round was probably the best for him...as he flew through this one again with no problems. Well, except the second night. I went out and got him some Carl's Jr. for dinner, at his request, but as soon as he took a "whiff" of it, out came whatever he had eaten earlier that day. "Ok...maybe not" he said. And that was that...he was totally fine after that. His energy level was normal as ever, the nurses can vouch for that. Patrick often strolled himself, with I.V. poll in tow, out to visit the nurses quite often. They like to visit with him, he has alot to talk about. I'm pretty sure he is educating the whole pediatric wing about trains.

Mark has a baseball game today at Kennedy (if it doesn't rain). It may be their last game as the RedSox, as their coach all of sudden resigned lastweek. Bob has taken over until we can find a new coach, but today is the deadline to find one, and we haven't. The league officials said they will have to break up the kids into others existing teams. We are very upset about this. Mark is first baseman this year and doing awesome. If he gets tossed into another team, he will be bottom of the totem poll as far as positions go. He already said he didnt want to play because his coach quit. But I wont let that happen. Stay tuned for more on that issue.....Lori

Tuesday, April 1, 2003 10:05 PM CST

Patrick began Round 4 today.

He is back at Kaiser and should be in there for the rest of the week.
Patrick was surfing the web this evening looking for, you guessed it TRAINS. We had fun finding links to Train pictures and sending them to him through AIM.

He is truly amazing! He has recovered from every round of chemo with such fierceness and courage. He will do so again.

Send them your prayers and warm thoughts.

Aunt Julie

Thursday, March 27, 2003 3:17 PM CST

Ok, ok...Here is a new journal entry!! Some of you have been wondering why I haven't been writing. Simply not much going on. Patrick went into Packard yesterday for another attempt at collecting stem cells. This time went alot better than the last. They got just enough to save for the transplant later on, but wanted to collect a bit more to be on the safe side. So, we went in this morning for the completion. We might have to return to Kaiser this week for round 4 of chemo. But with the recent news of the warm weather we are supposed to get this weekend, mom's not thrilled about it and wishes we can start Monday. Now, that Patricks "counts" are way up, we just want to be outside as much as we can and soak up the sun. Once he is admitted for chemo, he is stuck in that room for 4 days straight. On the other hand, sooner in....sooner out.
In other news....Mark has been doing awesome in baseball! Last week at opening day for Cupertino National Little League, in a Hit-A-Thon contest(contest for the longest ball), he was the very last player up for the day, and hit the ball 301 feet, beating the whole minor league. He was on cloud 9 the rest of the day, and very proud of himself, as we all were. He needed that ;) Yesterday was the first game...and they won by a huge margin. Great way to start the season. This year Mark is playing 1st base...(previous years he was left field). He worked hard on his fielding thinking he would be left field again this year and has dramatically improved. Much to his disappointment of being placed at first base, he now realizes how important that postion is. Well..that, and he is finally getting some action during the game. His next game is this Saturday at 3pm at Kennedy. Come out and root for the RedSox!!! ...STAY TUNED....Lori

Thursday, March 27, 2003 2:01 PM CST

Well Patrick is in the middle of his recovery of the 3rd round of chemo. He is doing fine. He's having a bit more side effects from this new round, but nothing that wasn't expected. He's a real trooper. He went in for additional stem cell rescue at Stanford yesterday and again today. So everything is right on schedule. The doctors will make sure his counts are up and that they were able to rescue enough stem cells before they determine if he is ready to begin round 4.

After round 4, the protocol for stage 4 neuroblastoma calls for another round of ALL tests so that they can re-stage the cancer. This will be the definitive time when we really get to see how Patick's body and the treatment has been responding. We will have an extensive report for everyone at that time, which I anticipate will be around the end of April or first part of May.

In the meantime there isn't much to report. Just know that Patrick is really doing well and at this point, he's really bored. Now that the weather is getting much warmer, I am sure he is looking forward to being able to go outside and play.

Patrick reads his guestbook all the time, so please keep them coming.

Aunt Julie

Monday, March 10, 2003 11:46 AM CST

Hi all....
It's day 4 here at Kaiser and Patrick is sailing through round 3 chemo fine so far, with only minor bouts of nauseousness. I was just told we are going home tomorrow (tues). Usually he does the chemo for 4 days, but round 3 calls for 5 days (day 5 is to flush his system, this type of chemo sticks to the bladder, so they want hydrate(flush out chemo....make him pee)so it doesnt cause damage). I can't wait to get him out of here, out of this temperature controlled room. It's been nice outside and he needs fresh air. He has been sleeping great, a bit tired this morning though. Probably because the nurse woke him up this morning at 1:30AM to take his vitals. STAY TUNED.......Lori

Friday, March 7, 2003 2:30 PM CST

Hi Everyone....Patrick is now is the hospital for round 3 of chemotherapy. We should be in here until Monday afternoon. His room phone # is (408)236-4852. Thanks for checking in....Lori

Tuesday, March 4, 2003 1:12 AM CST

Well, this day seemed like it took weeks to get here. Probably the longest weekend our families had in a long time. Today is the day we got the results of the MIBG scan from last Thursday. I am happy to report that the MIBG shows that the chemo is working so far!!! It shows that his cancer on his hips is starting to deminish. However, the cancer on his upper left arm and chest(sternum) remains the same, which means the chemo is preventing the cancer from growing and/or spreading. Dr Wong says that Patrick is doing great so far, but he will still need to complete at least 8 more rounds of chemo and eventually do some radiation, etc. We are by no means "out of the woods" and I realize we have many months/years ahead of battle, but I can rest easy that he is making progress today. Patrick is scheduled to go in for round 3 of chemo this Wednesday until Saturday.....wish him well....Love, Lori

Thursday, February 27, 2003 11:43 AM CST

Today is MIBG day. Then we are done with hospitals until Monday where Patrick has a routine hearing test (sometimes the chemo damages hearing, but mostly high pitch sounds, not the everyday sounds..Im told), then the bone scan later that day. And Tuesday he will have a CT scan. Meanwhile...we will enjoy our weekend while his "counts" are normal, before he starts chemo sometime next week. Stay tuned, I will post results of tests in the next few days.........Lori.

Monday, February 24, 2003 9:04 PM CST

Well, I just got word that Patrick needs to go back to Packard for a 3rd stem cell harvest...Yep, they didnt get everything they need again. Patrick will go back tomorrow morning and hopefully complete the harvest. Later on that day we head back to Kaiser for the echo. Wednesday is his injection for the MIBG scan that will take place on Thursday. This is the scan that should tell us whether or not the chemo is working (fingers crossed please :) ............Just a quick shot out to everyone to thank you for continually checking the website. Patrick (and the rest of his family) love reading the guestbook to see who's checking in! I will also be getting some new pictures on there soon...so, check back again!!.....Love, Lori........

Monday, February 24, 2003 3:17 PM CST

Today Patrick completed his second stem cell harvest up at Packard. His first was Saturday morning, but they didnt get quite the amount they needed, so we went back this morning for another attempt. We may even need to go back one more time. They can do the procedure up to 5 times, but only one more day may be needed for him. Each procedure takes about 3 hrs, so, Patrick and I play games or he plays video games or naps. He continues to feel fine and keeps himself busy by playing with his trains, and riding his bike. Yesterday Mark was teaching him how to swing a bat properly and pitched some balls to him. Having a good time before round 3 of chemo coming up soon. Tomorrow, Patrick goes in for a routine echocardiogram....STAY TUNED...Love, Lori

Friday, February 21, 2003 0:29 AM CST

Yea! Patrick is back home!! He did great while getting his transfusions. He went in sort of pale and very tired, and soon after they started the 1st transfusion, he was like his old self again. He is scheduled to go into Packard Saturday morning for the stem cell harvesting. In other news...Mark is starting Cupertino National Little League again this spring, and had his first practice today which I had to miss. But I found out I GET to work the snack shack again sometime this season. Its the parent volunteer thing. Only, the word volunteer doesn't mean you get a choice whether to volunteer, YOU HAVE TO VOLUNTEER or give an $85 "donation". So, I will have to miss at least one game as you can't see the field from the snack shack, which I must add is a huge snack shack that might as well be a 7-11. Otherwise, it should be a good season again as most of the boys from last seasons team are on the same team this season...Go Red Sox!! I will post his game dates, and anyone is more than welcome to catch a game. Mark will be happy to have some rowdy fans......STAY TUNED....Love, Lori

Tuesday, February 18, 2003 5:32 PM CST

Hi all...
Patrick is still feeling pretty good. But he has had a temp. of 100 since lastnight. Protocal is to admit him in the hospital when it reaches 101.5. Not much to you and I but not safe for Patrick when is immune is down. Anyways, today they wanted him in for a blood draw to monitor his counts in order to be ready for Packard. So, while we were here, I asked the nurse to take his temp again just to be sure...and it had climed to 101.4. The doctor thought it would be best for him just to go ahead and get him upstairs for the night. No sense of us going home if it's just 1 point lower than the protocal. I agree. If something is stirring inside him, we need to tackle it now. They will perform more blood and urine tests as well as give him antibiotics for at least 1 night. Hopefully we will be home tomorrow some time. Room phone # is 236-4752....Love, Lori

Thursday, February 13, 2003 2:41 PM CST

Hi....Its been 4 days since Patrick has been home from his 2nd round of chemo, and so far he's doing great. No complications yet, and we are keeping our fingers crossed that he rides this one through as well as last time. Actually, this round is much better than the 1st so far. He doesn't have the jaw pain or headaches like before.
No word yet on the date of the stem cell harvest, but as soon as his counts are up to the levels they need to be, we will go to Packard immediatly for the procedure. Also, we will be doing another MIBG scan soon, to see if the chemo is doing it's job. Now for the fun news....If you have been reading the guestbook entries, you see that Uncle Dan mentioned a "special visitor" we had yesterday. Former 49er Ronnie Lott came over to the house to see Patrick! I, on the other hand, was at the boys school leading my weekly book club with Mark and missed the visit. Fortunatly, we see him often at Little League games and I can thank him later....Stay Tuned....Lori

Monday, February 10, 2003 9:16 AM CST

Patrick completed his 2nd round of chemo last night at 8pm (Sunday)and he comes home this morning!!!. Again he has had no problems so far! Of course the tough part is when he comes home and his counts drop. We again have to keep a close eye on him. Dr. Wong says its most likely Patrick will be back in the hospital from complications from the chemo(i.e. fever,etc). He can't believe how well he is taking the chemo so far. I will have to start giving him "the shot" again and with a double dose, so that we can boost his counts back up quicker in preparation for his stem cell procedure at Packard. Im sure he will be happy to come home and get some decent sleep, as all the i.v. fluids were making him have to go #1 literally every 1/2 hour! He is a pro at this hospital stuff though. He didnt have to wake us up or alert the nurses too much if he had to "go". He would unplug the i.v. pole and wheel it to the bathroom himself. He even has invented some games at the hospital... we would see how quick the nurses get to his room when pushing the nurses button. Or the contest he has with himself on how many "cc's" of #1 he can go at one time. I think his record is 650cc's so far. Hey, you get pretty creative when your in there so long. Watching T.V. can only go so far. We try to make the best of his stays there, whatever works :) ....Stay Tuned...Love, Lori.....

Friday, February 7, 2003 10:13 AM CST

Patrick is now on the 24hr chemo again, and doing fine so far. Lastnight about 3am, He woke up feeling sick but the nurse gave him some Zofran before anything happened. Thank goodness, because once you start vomiting, no amount of Zofran can stop it. So, we try to stay on top of it. We are happy to report that he has his own room this time with a great view! He can even see Great America! He is in room 770 and the direct phone# is 408-236-4304. Uncle Bob might be staying over night with Patrick tonight (something about a guy's night :) Come visit us soon...the coffee is great here in the cafeteria..no, really it is! So, come join me for a cup....Love, Lori.......

Thursday, February 6, 2003 3:10 PM CST

Ok...Just now got a call from the doc.. Patricks counts from this morning are good. So, he wants him in now for round 2! We will be at Kaiser-Santa Clara 900 Kiely Blvd. Please..again no sick visitors or even if you think you've been near sick people(them are the rules now). You may also call me on my cell (408)393-4729. And of course...email us too! I will have my laptop there with us(so, bring over your dvd's so we can watch some movies...as the hospital room t.v. gets about 2 1/2 channels:( ...Stay tuned...Love, Lori (P.S. Congrats go out to our newest members of "Club Bald"...to Josh and Julian Cornwell and Patrick and Nick Montijo of Cupertino, and to Scott, Dan, Alex, Ryan, & Dominic Campbell (Mark and Patricks uncles and cousins) of Stockton!!! You may view all "Club Bald" members at www.trains4patrick.com
My favorite is still Aunt MarDee! WHO"S NEXT??!!!??

Monday, February 3, 2003 5:37 PM CST

Well...just got word from the doc. that his blood counts are NOT up to the level we need them to in order to start chemo again tomorrow. He said not to worry, this is normal when we stop the GFR (shots I've been giving him). Dr. Wong thinks he'll be good to go in on Thursday. Lori

Monday, February 3, 2003 1:45 PM CST

This morning we went in for another blood count. And Dr Wong says Patrick is ready for round 2 of chemo. So, we GET to go in tomorrow (Tuesday). I say "he GETS to go in" instead of "he HAS to go in" now, because I am glad we are given a chance to beat this, since we found out about his cancer so late. So, everyone...keep your fingers crossed and lets hope round 2 goes as smoothly as round 1. He will probably be in Kaiser for about 4-5 days like last time. For today, he's getting his last fix in of his model trains before he goes in!! Stay tuned for our room #.....Love, Lori....

Friday, January 31, 2003 at 8:20 PM (PST)

Hi...Today Patrick and I decided since it was a nice sunnyday, to take the Caltrains from Sunnyvale to San Mateo to a cool toy store with train stuff. But the most fun was the train ride! The train conductor even let Patrick announce the next stop over the P.A. system! Smiles for hours after that. In other news...unfortunatly, we received some bad news on the way home. A dear friend of ours and Grandma and Grandpa Weismann, Fred Vertel of Los Altos Hills, lost his beautiful home in a horrible fire that burned it to the ground last week. You may have heard us talk about his home before. He has an awesome garden railroad in his backyard and over $1,000,000 worth of collectable and rare trains. He has hosted many tours and parties for disabled children and train fanatics. Also lost in the fire was "Louise" a life-size locomotive train that was used this past September in a yet-to-be released Tom Cruise movie, "The Last Samurai" (yes, it was in his backyard as well)Grandma and Grandpa lived right next door to Fred for many years before they moved to Auburn. We spent many hours at Freds "working trains" since the kids were babies...and he is part of the reason Patrick is so into trains still to this day. Patrick and I went to the site of the fire today and were in such disbelief at this devastating loss, that he cried all the way home. PLEASE read the news story from the "Los Altos Towne Crier" at www.losaltosonline.com/articles/2003/01/28/news04.txt
We can thankfully say that Fred made it out of the house safely. We wish him well too. ....STAY TUNED...Love, Lori

Thursday, January 30, 2003 at 06:28 PM (CST)

What a wonderful day! This morning Patrick had his blood drawn to see if his white blood cell count went back up..and it did!!! He went from 0.1 on Monday, to 6.5 today! This means his immune system is stonger(and for now,no more shots from mom! YEAH!!!) and we can take on some visitors again...BUT PLEASE...THE "NO SICK VISITORS" RULE STILL APPLIES AND ALWAYS WILL UNTIL HE IS CANCER FREE. We are scheduled to go with our 2nd round of chemo late next week and we don't want Patrick to catch anything that will delay his treatment. It's already a blessing we made it through the 1st round without any problems :) STAY TUNED...Love, Lori

Thursday, January 30, 2003 at 01:13 AM (CST)

Hi Everyone!!! It's me Lori...Patricks mom. Just thought I'd add in my first journal entry. Julie will still be the awesome official journal writer, but sometimes I will pop in to say a few things too :) Patrick has had a great week even though his white blood count was sooo low this past week. He has narrowly escaped two threats of blood transfusions. He has a blood test tomorrow morning to see if his counts are up. Let's hope so, so he can have some visitors again! Then after, we head to Stanford's Lucille Salter Packard Hospital (which from now on, I will just call 'Packard Hospital')for our meeting on the stem cell procedure.
Patrick had a great day again today. He has flown through this 1st round of chemo without much complication. Just the usual minor pains and headaches caused by the chemo. And some soreness from the daily shot I have to give him in his legs and arms, but he's slowly but surely getting better at taking the pain. And anyone who's ever personally had to give their kids a shot will know how painful it is for the parent too :( But whatever it takes. Even though he sailed through this round, I know from reading other parents stories of chemo treatments, that the road ahead will surely prove to be a rough one. But again..whatever it takes... I will not accept our alternative.
We hope that tomorrows doc appt shows higher blood counts so we can start round 2 of treatment on time. So far, so good. We will update you on when we will be back in Kaiser so we can have visitors!
Please know that we are EXTREMLY thankful for everything everyone has done for us so far...and if I haven't thanked you personally yet, I will.
Also, please check out Patrick and Uncle Bobs website, its Trains4Patrick.com. You will see some more great pictures!(be sure to click on the "Club Bald" link when you get there to see some familiar faces of brave 'well wishers'(braver than me). Please note that pictures circulate often on both websites..SO KEEP VISITING OUR SITES!!! With love, Lori

Thursday, January 30, 2003 at 01:13 AM (CST)

Hi Everyone!!! It's me Lori...Patricks mom. Just thought I'd add in my first journal entry. Julie will still be the awesome official journal writer, but sometimes I will pop in to say a few things too :) Patrick has had a great week even though his white blood count was sooo low this past week. He has narrowly escaped two threats of blood transfusions. He has a blood test tomorrow morning to see if his counts are up. Let's hope so, so he can have some visitors again! Then after we head to Stanford's Lucille Salter Packard Hospital (which from now on, I will just call 'Packard Hospital')for our meeting on the stem cell procedure.
Patrick had a great day again today. He has flown through this 1st round of chemo without much complication. Just the usual minor pains and headaches caused by the chemo. And some soreness from the daily shot I have to give him in his legs and arms, but he's slowly but surely getting better at taking the pain. And anyone who's ever personaly had to give their kids a shot will know how painful it is for the parent too :( But whatever it takes. Even though he sailed through this round, I know from reading other parents stories of chemo treatments, that the road ahead will surely prove to be a rough one. But again..whatever it takes... I will not accept our alternative.
We hope that tomorrows doc appt shows higher blood counts so we can start round 2 of treatment on time. So far, so good. We will update you on when we will be back in Kaiser so we can have visitors!
Please know that we are EXTREMLY thankful for everything everyone has done for us so far...and if I haven't thanked you personaly yet, I will.
Also, please check out Patrick and Uncle Bobs website, its Trains4Patrick.com. You will see some more great pictures!(be sure to click on the "Club Bald" link when you get there to see some familiar faces of brave 'well wishers'(braver than me). Please note that pictures circulate often on both websites..SO KEEP VISITING OUR SITES!!! With love, Lori

Thursday, January 30, 2003 at 01:13 AM (CST)

Hi Everyone!!! It's me Lori...Patricks mom. Just thought I'd add in my first journal entry. Julie will still be the awesome official journal writer, but sometimes I will pop in to say a few things too :) Patrick has had a great week even though his white blood count was sooo low this past week. He has a blood test tomorrow morning to see if his counts are up. Let's hope so, so he can have some visitors again! Then after we head to Stanford's Lucille Salter Packard Hospital (which from now on, I will just call 'Packard Hospital')for our meeting on the stem cell procedure.
Patrick had a great day again today. He has flown through this 1st round of chemo without much complication. Just the usual minor pains and headaches caused by the chemo. And some soreness from the daily shot I have to give him in his legs and arms, but he's slowly but surely getting better at taking the pain. And anyone who's ever personaly had to give their kids a shot will know how painful it is for the parent too :( But whatever it takes. Even though he sailed through this round, I know from reading other parents stories of chemo treatments, that the road ahead will surely prove to be a rough one. But again..whatever it takes... I will not accept our alternative.
We hope that tomorrows doc appt shows higher blood counts so we can start round 2 of treatment on time. So far, so good. We will update you on when we will be back in Kaiser so we can have visitors!
Please know that we are EXTREMLY thankful for everything everyone has done for us so far...and if I haven't thanked you personaly yet, I will.
Also, please check out Patrick and Uncle Bobs website, its Trains4Patrick.com. You will see some more great pictures!(be sure to click on the "Club Bald" link when you get there to see some familiar faces of brave 'well wishers'(braver than me). Please note that pictures circulate often on both websites..SO KEEP VISITING OUR SITES!!! With love, Lori

Thursday, January 30, 2003 at 01:13 AM (CST)

Hi Everyone!!! It's me Lori...Patricks mom. Just thought I'd add in my first journal entry. Julie will still be the official journal writer, but sometimes I will pop in to say a few things too :) Patrick has had a great week even though his white blood count was sooo low this past week. He has a blood test tomorrow morning to see if his counts are up. Let's hope so, so he can have some visitors again! Then we head to Stanford's Lucille Salter Packard Hospital (which from now on, I will just call it 'Packard Hospital')for our meeting on the stem cell procedure.
Patrick had a great day again today. He has flown through this 1st round of chemo without much complications. Just the usual minor pains and headaches caused by the chemo. And some soreness from the daily shot I have to give him in his legs and arms, but he's slowly but surely getting better at taking the pain. And anyone who's ever personaly had to give their kids a shot will know how painful it is for the parent too! But whatever it takes. Even though he sailed through this round, I know from reading other parents stories of chemo treatments, that the road ahead will surely prove to be a rough one. But again..whatever it takes. I will not accept our alternatives.
So, we hope that tomorrows doc appt shows higher blood counts so we can start round 2 of treatment on time. So far, so good. We will update you on when we will be back in Kaiser so we can have visitors!
Please know that we are EXTREMLY thankful for everything everyone has done for us so far...and if I haven't thanked you personaly yet, I will.
Also, please check out Patrick and Uncle Bobs website, its Trains4Patrick.com. You will see some more great pictures!(be sure to click on the "Club Bald" link when you get there to see some familiar faces of brave 'well wishers'(braver than me). Please note that pictures circulate often on both websites..SO KEEP VISITING OUR SITES!!! With love, Lori

Tuesday, January 28, 2003 at 01:03 PM (PST)

Patrick has had 2 more blood tests and with the exception of his WBC still being a bit too low, currently at 600, everything else is stable. ;-) He lost 1 pound since Wednesday, but with this being the worst week of the three, there isn't a real concern. He goes back in for a check up on Thursday. He is still eating and drinking and hasn't had any real side effects from any of the drugs.

Well except he's starting to lose his hair. Last night he and Mark were having way too much fun pulling it out. Mom didn't really have fun watching, but the boys thought it was cool. Patrick is going to get his head shaved today. He thinks its cool that he will look like Vin Diesel (sp?) from XXX Extreme.

I will be taking photos this evening of the Vin look alike. There may be a few others tonite as well who end up hairless, but we'll let that be a surprise. I will try to upload the pictures from this evening tomorrow, either to this page or Patrick's other site.

Patrick received a Get Well Card from the President of the United States yesterday. Seems Grandpa Weismann has some influence. :-) Look for the picture in the next day or so.
Julie

Thursday, January 23, 2003 at 11:09 PM (PST)

We received Patrick's blood count results and his white blood count WBC is down to 0.1. So no visitors. He is at high risk of infection right now. However, his other counts were good, so no action needs to be taken, we just have to keep him safe from infection. The chemo likes to attack the WBC as well as the bad guys. So hopefully its attacking them as much as the WBC's. Lori (Mom) is doing great. She's checking and checking his temperature to make sure he doesn't get a fever, so far Patrick is being a trooper and doing fine. He hasn't lost any weight, which is excellent.

Wednesday, January 22, 2003 at 12:46 PM (PST)

I just spoke with Lori about the check up Patrick had with the doctors today.

They drew blood to check on the blood count, but we won't know the results until later today or tomorrow.

His weight is remaining at 61 pounds. Patrick is going to stay on the Zofran (anti-nausea) drug for awhile since they tried stopping and Patrick got sick, so back on. Patrick is doing much better taking his meds. They seem to have it down with a couple of ounces of gatorade and the ground up pill. Yeah. Lori said he is really eating more than she thought he would and has lots of quick snacks for him.

He's beginning to become more tired, more tired than when he takes benadryl. His temperature is remaining steady and their doesn't seem to be a concern if his temp is a little low, only if the temp rises to 100.4 and it hasn't even come close.

He loves his new fleece pants MarDee made him and is wearing them now with his camouflage sweatshirt. Nice and warm he says. ;-)

Monday, January 20, 2003 at 02:36 PM (PST)

Patrick is home now. Gramdma Weismann visited with him all day yesterday. Lori, Danny & Bob were repainting and recarpeting both Patrick and Mark's bedrooms so the house was pretty hectic.

Patrick is still doing pretty good. He really doesn't like the taste of the medicines he has to take. Lori keeps trying different methods to mask the taste, but so far nothing seems to work. Something will work.

Patrick goes in for a checkup on Wednesday with Dr. Wong. I will post an update then. Julie

Saturday, January 18, 2003 at 06:27 PM (PST)

I just got back from visiting Patrick at the hospital. He went home about an hour ago. He will remain at home until the next round of chemo. He will be visiting the hospital on Wednesday's for checkins.

Patrick was still pretty bored, but in great spirits. When we (MarDee and I) arrived, Mark, Lori and Grandma Weismann were there. He and Grandma had been reading Harry Potter the last couple of days to fill in the time. He had his last chemo treatment last night and he had to wait 24 hours before he could go home. Lori had to administer her first injection. Patrick did not like the idea that he was getting a shot and would be getting one everyday for a couple of weeks. (This the drug to help his muscles while the chemo is doing its job.) I told him about my shot in the butt with cordizone and he thought that was funny. MarDee asked him if it would help if Lori gave her a shot of saline first so that he could see it wasn't that big of deal. He thought that was cool and it gave Lori a practice run. Lori did brilliantly and so did Patrick when she gave him his shot.

They had to remove his dressing on the catheter (sp?). Patrick decided that it hurt much much more than the shot. Fortunately, they gave him a new patch to cover the hole and it doesn't hurt when it is removed. YEAH.

We discovered something about Patrick while we were there. He really likes having his feet tickled. ;-)

Patrick is glad to be going home, he can't wait to check his email. I printed the guest book for him to read today. He thought it was pretty cool that all these people he didn't know from all over the country were writing to him.
Aunt Julie

Friday, January 17, 2003 at 04:56 PM (CST)

From Auntie Holly:
I talked to Lori today and Patrick is doing great! The Zofran has kept pretty much all the nausea away. He was in the computer room playing. It will be wonderful if he can get through this without at least this one nasty side effect. He will start the G-CSF shots to stimulate white cell growth so Lori is learning how to give those injections today. (Holly is the family medical expert)

From Auntie Julie:
I just spoke with Patrick. He is doing great. Bored out of his mind and not getting much sleep at night, due to the two babies sharing the room with him. He was watching a DVD, "Triple X" and his Grandma Weismann was there visting. His spirits are good and he can't wait to go home. Lori was checking her emails and he's just hanging out waiting for final tests to decide if he can go home tomorrow. His appetite is a bit low, but Grandma Weismann brought his some goodies that he likes so hopefully he will eat. We need to fatten him up.

Tuesday, January 14, 2003 at 05:29 PM (CST)

Dear Family and friends of Patrick Weismann. The week before Christmas Patrick was taken to the hospital with severe pain in his side. A large tumor was discovered and he was taken to Stanford for additional tests and diagnosis. It was believed that he may have neuroblastoma. He under went surgery and the tumor (size of small football) was removed as well as a lymph node. Another lymph node was biopsied and bone marrow was removed for testing. The pathology reports on the tumor, and two lymph nodes confirmed the diagnosis of neuroblastoma. He was scheduled for the final test MIBG which would determine if the neuroblastoma had spread and how far. Patrick was able to go home for Christmas and recovered from surgery like a trooper.

Friday, Jan. 10, we received the results of the MIBG scan and it was confirmed that the neuroblastoma cells had spread and Patrick was diaganosed with Stage 4 neuroblastoma. He was admitted into Kaiser, Santa Clara's Pediatric Oncology Department this morning and they are preparing his body for the first cycle of chemotherapy treatment. His body needs to be completely hydrated before chemotherapy can begin, so that is what they are doing now.

Patrick will be in the hospital for approximately 3 days after chemotherapy so that the doctors can confirm that Patrick is urinating properly. He will not be able to go home until he is.

After Patrick goes home he will be in recovery from the chemotherapy, he will be very sick. It typically takes 3 weeks for a child to regain his strength before beginning the next cycle of chemo.

It is important for all family members to understand that chemotherapy completely wipes out the immune system. Patricks chemo will be very intensive and it will be quite a struggle for him and for his parents while he is recovering from the treatments.

DON'T VISIT PATRICK IF YOU ARE SICK! In fact for awhile, please try to limit your visits. Call before coming over. Don't just drop by. Patrick may not be well enough and/or Lori and Carol may not be up for visitors. It is imperative that all family and friends understand that if you or your children are sick, please wait until you are well to visit. Also, when you do visit, make sure to wash your hands with anti-bacterial soap before and after you visit Patrick. This will help ensure that Patrick does not get infected with any illness while his little body is fighting to recover from the chemotherapy.

He will undergo 2 cycles of chemotherapy and then they will perform another round of tests to determine if Patricks body is responding to the chemo. If it is, they will harvest stem cells for future re-transplantation and then begin the remaining 4 cycles of the chemotherapy. If everything goes well and the chemo is doing its job in suppressing and killing the neuroblastoma cells after the 6 cycles, they will transfer Patrick to Stanford for the stem cell transplantation and he will also begin treatment of accutane and possibly the neuroblastoma antibodies.

This treatment will last between 4-6 months. Lori will need all the support she can get. Mark will need attention and care.

I will be updating this website every time I visit him or receive an update on Patrick. Everyone is welcome to sign on to the guest list and I will pass this info onto Patrick. Also, I will encourage Lori and Jim, as well as other family members to enter their own journal entries.
Bye for now. If you have any questions, feel free to email me. Julie Weismann

Tuesday, January 14, 2003 at 05:29 PM (CST)

Dear Family and friends of Patrick Weismann. The week before Christmas Patrick was taken to the hospital with severe pain in his side. A large tumor was discovered and he was taken to Stanford for additional tests and diagnosis. It was believed that he may have neuroblastoma. He under went surgery and the tumor (size of small football) was removed as well as a lymph node. Another lymph node was biopsied and bone marrow was removed for testing. The pathology reports on the tumor, and two lymph nodes confirmed the diagnosis of neuroblastoma. He was scheduled for the final test MIBG which would determine if the neuroblastoma had spread and how far. Patrick was able to go home for Christmas and recovered from surgery like a trooper.

Friday, Jan. 10, we received the results of the MIBG scan and it was confirmed that the neuroblastoma cells had spread and Patrick was diaganosed with Stage 4 neuroblastoma. He was admitted into Kaiser, Santa Clara's Pediatric Oncology Department this morning and they are preparing his body for the first cycle of chemotherapy treatment. His body needs to be completely hydrated before chemotherapy can begin, so that is what they are doing now.

Patrick will be in the hospital for approximately 3 days after chemotherapy so that the doctors can confirm that Patrick is urinating properly. He will not be able to go home until he is.

After Patrick goes home he will be in recovery from the chemotherapy, he will be very sick. It typically takes 3 weeks for a child to regain his strength before beginning the next cycle of chemo.

It is important for all family members to understand that chemotherapy completely wipes out the immune system. Patricks chemo will be very intensive and it will be quite a struggle for him and for his parents while he is recovering from the treatments.

DON'T VISIT PATRICK IF YOU ARE SICK! In fact for awhile, please try to limit your visits. Call before coming over. Don't just drop by. Patrick may not be well enough and/or Lori and Carol may not be up for visitors. It is imperative that all family and friends understand that if you or your children are sick, please wait until you are well to visit. Also, when you do visit, make sure to wash your hands with anti-bacterial soap before and after you visit Patrick. This will help ensure that Patrick does not get infected with any illness while his little body is fighting to recover from the chemotherapy.

He will undergo 2 cycles of chemotherapy and then they will perform another round of tests to determine if Patricks body is responding to the chemo. If it is, they will harvest stem cells for future re-transplantation and then begin the remaining 4 cycles of the chemotherapy. If everything goes well and the chemo is doing its job in suppressing and killing the neuroblastoma cells after the 6 cycles, they will transfer Patrick to Stanford for the stem cell transplantation and he will also begin treatment of accutane and possibly the neuroblastoma antibodies.

This treatment will last between 4-6 months. Lori will need all the support she can get. Mark will need attention and care.

I will be updating this website every time I visit him or receive an update on Patrick. Everyone is welcome to sign on to the guest list and I will pass this info onto Patrick. Also, I will encourage Lori and Jim, as well as other family members to enter their own journal entries.
Bye for now. If you have any questions, feel free to email me. Julie Weismann

Tuesday, January 14, 2003 at 05:18 PM (CST)

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Tuesday, January 14, 2003 at 05:18 PM (CST)

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