Thursday, May 31, 2007

Who reads this blog, anyway?

Here is a recent report (based just on the last 500 visitors, and relies on cookies -- if your browser doesn't take the cookie, you get counted more than once):

Country Name

Los Angeles
United States

United States

Rancho Cucamonga
United States

United States

United States

United States

United States

- (unknown)

Tel Aviv
Tel Aviv

San Pedro
United States

United States

Grand Rapids
United States

San Francisco
United States

Redondo Beach
United States

United States

United States

United States

New Jersey
United States

Quezon City

United States

United States

New Jersey
United States

United States

San Jose
United States

Hong Kong
Hong Kong (sar)
Hong Kong

United States

Highland Park
United States

United States

New Jersey
United States

Salt Lake City
United States

United States

Castellón De La Plana

United States

United States

United States

United States

Yerushalayim (jerusalem)

United States

Thank you, Turning Point!

We've received lots of support and encouragement from many sources, but one of the best definitely is our kids' school. (If you don't know anything about it and are interested, check out It's not just a place where Ben and David are getting a great education, but it's also a community where we've met lots of great new friends.

The teachers are just terrific. David's teacher, Mrs. Beals, has been giving us daily reports on how David is doing. Other teachers, including several who have not had either of our kids in their class, have been sending little gifts and notes of encouragement to Ben and getting their classes to do the same. Ben got a great card from his own K-1 class when he was in the hospital, he got a neat book put together by another K-1 class, and yesterday (as many of you may have seen) another K-1 class posted comments on this blog for Ben to read. This is in addition to lots of e-mails and other stuff.

And other parents have been great too. They are feeding us constantly (delivering meals to the house more than once a week) and giving us lots of support. It's really been great. So thanks to everyone in the Turning Point community! We really, really appreciate everything you've been doing for Ben and for us.

Wednesday, May 30, 2007

Oops! (And thank God!!!)

Dr. Hurvitz just called Nicole with the final test results. Apparently, the preliminary report was wrong. What is the percentage of blast cells left in Ben's bone marrow?


Sorry for the scare! Needless to say, we are incredibly relieved. There is still a long road ahead, but things are looking good. We'll see the doctors again on Friday, so we should have more to report then.

I'll post some more when I can, but I am at work trying to get some things done.

Bad News

We don't have a final count yet, but Ben is going into the "high-risk" treatment protocol because he still has too many blast cells in his bone marrow. This does not mean he's not likely to be cured, but it does mean he'll get much more intensive chemo. I will post more information on his treatment when I have time.

The good news is that Ben's white blood cell count is up a lot, meaning that he is responding well to the chemo. He doesn't have to take oral antibiotics anymore, which is great because they taste awful and cause nausea. He has some sores in his mouth caused by the steroids which we'll treat with new medicine I just picked up from the pharmacy.

I'll post more later, but I need to get home to drop off the medicine (we came in separate cars), then go to work.

Preliminary Report

I am posting from just outside the playroom where I can get better Blackberry reception. Ben had blood drawn and we are waiting for lab results before we see the doctors. We are told that there are preliminary bone marrow results, but we don't know what they are yet.

We have just been called in to see the doctors -- more later.

The Big Day (?)

We go to Cedars this morning to see the doctors. I suppose this is just another appointment, but we should get the bone marrow biopsy results, so it is a big deal. Keep your fingers crossed!

Tuesday, May 29, 2007

Message of the Day

A great one I got on a hockey message board I frequent:

As someone currently in cancer remission, I wanted to send you a personal message. I was truly saddened to hear about your son. It seems so wrong when a child is diaganosed with cancer. I have some good friends whose 2 yr old son was diagnosed with cancer 3 years ago and is now cancer free. There were some ghastly times, but in the end, much joy. I feel sure it will be the same for you and your family.

Having been through cancer treatment myself this past year, I can say this to you with absolute certainty: You and your family will find wells of strength that you never knew you were capable of having. At the end of the day, you will be closer and much stronger. You and your family are in my prayers thoughts. Godspeed.

No news yet

We'll hopefully get the test results tomorrow. No reason to think they won't be positive, but I have to admit I am pretty scared. It sucks to have no control over something so important.

Waiting for Big Test Results

I'm at work today. We are waiting for the results of Ben's bone marrow biopsy which was done on Friday. We need the blast cells (cancer cells) to be less than 5% of the total cell count in his bone marrow, which would indicate that the chemo is working well and he is likely to be cured. If we don't reach this target, it means the chemo is not working as well as we would like and he is a "high-risk" patient.

So today is a really good day to pray for Ben if you are so inclined. I'll post the results when we get them. Might not be until tomorrow morning when we see the doctors at Cedars.

Monday, May 28, 2007

Hey Ms. Thomas!

I have been getting some inquiries about how people can sponsor you in your marathon. Can you post a comment with a link to the site or other information people need to sponsor you?


Sunday, May 27, 2007


Apparently the steroids Ben takes are not just to get his body going -- they actually kill cancer cells. He's had some significant side effects from them -- face is very puffy and he is eating like a horse. Literally he is eating like 10 full meals a day -- no exaggeration. The puffy face and weight gain will reverse themselves after the treatment stops, or so we are told.

Happy Memorial Day!

Saturday, May 26, 2007

Thanks for the Comments!

Ben's face totally lights up when I read him the comments that people post. Ms. Thomas's comment today was particularly effective. Thanks, Ms. Thomas!

Great E-Mail to Scott

This is Kevin Hearn, I am a good friend of Marc Nathan's. I play in the band Barenaked Ladies.

I heard from him that you are going through some awful times right now.

I am a leukemia survivor, it has been almost nine years now (I am 37).

I have been there and back, and I can well imagine how overwhelming this must be for you all.

I know MANY people who have survived this. There has been so much progress with this type of cancer . . .

I just thought I would send a note to say hi and send some good thoughts your way.

If you or your son have any questions, please feel free to be in touch . . .


Friday, May 25, 2007

The PICC Line

What does the PICC line look like, you ask? Here you go! There is a sleeve that covers it up when we are not using it -- here are photos with the sleeve in use and withdrawn.

The New Prescription

Cipro -- an antibiotic. His white blood cell count must still be really low.

I gave Ben and David chess lessons this afternoon. They really picked it up quickly, and Ben already gets the concept of thinking ahead to future moves.

Ben really has been pumped up by the response to some threads I started about him on some message boards I frequent. Lots and lots of people pulling and praying for him. He also liked cards he got from my hockey team and my mother's office. He got an e-mail from a celebrity leukemia survivor which I will post if I get permission -- also very cool. A firefighter offered to send some fireman stuff and a soldier is sending unit patches and coins. He is really psyched! Thanks to all of you for helping Ben! It makes a huge difference.

Another One Bites The Dust

We're home. The bone marrow biopsy went well today. We won't know the results until Tuesday at the earliest. No results from today's blood draws yet, but Dr. Hurvitz just prescribed something new that I have to get from the drug store. If I hear anything, I'll post it.

We did hear that Ben's chromosome tests indicate that he is in a good prognosis category.

The Waiting is the Hardest Part

Hello from outpatient admissions at Cedars! In order to get into the PICC Center where Ben will get his bone marrow biopsy and chemo, we have to go through admissions again. And I have to say that waiting around is the worst part of this saga.

So we're checking out this saltwater fish tank here in the waiting room, and this fish is sitting on the bottom looking pretty pekid. I tap the tank and he keels over on his side, looking pretty dead. So I go to the receptionist and ask, "so where do I report a dead fish"? And she says, "oh, he's just resting. Tap the tank and you'll see.". So we do, and the fish swims around! Now he's on his side on the bottom again. That is one goofy fish!

I'll report later on our status. Right now, we're all really hungry and thirsty because Ben couldn't have anything after midnight and we're joining in the fast.

Thursday, May 24, 2007

The Infusion Center

Hello from the Infusion Center, Samuel Oschin Comprehensive Cancer Institute, Cedars-Sinai Medical Center. This place is pretty cool. Right next door to the playroom, it is a long, narrow room with a very high, arched ceiling and skylights. In the center of the room is a big fish tank. There are recliner chairs in the main corridor where people get IV infusions, and there are private rooms on both sides of the room with beds, tvs and bathrooms. Pretty nice setup.

Ben is just about done with the cryoprecipitate, so we'll leave soon. I am chasing David around right now, as the playroom is closed and he is pretty stir crazy. Time to get off the Blackberry so he can play BrickBreaker!


As I was posting the report below, Dr. Hurvitz called. Ben's fibrinogen is very low, so we have to go back to the hospital to get the cryoprecipitate now. This will be our first experience in the "infusion center" at the Cancer Institute, so I'll write about that later. Gotta go.

Some Test Results

Ben's bone marrow biopsy last week showed that 50% of the cells in his bone marrow were cancerous blast cells. This is a significant reduction from 95% the last time the marrow was biopsied, and even better in that there are fewer cells overall. What this means is that Ben is doing OK -- he is not having spectaluar progress, but it is still within the normal range as treatment goes. He will have another biopsy and more Vincristine (chemo) tomorrow. No spinal tap tomorrow.

Blood tests today showed that Ben's platelets and hemoglobin were good, but his white blood cell count is down quite a bit. So we need to be very careful about infection -- this is why we have bottles of Purell hand sanitizer all over the house and insist that people clean their hands with it before they enter.

We did not get fibrinogen results yet today. Fibrinogen is a protein made in the liver which assists in blood clotting. Many of you know that David was diagnosed two years ago with hypofibrinogenemia, an extremely rare genetic liver disorder. Basically David's liver does not produce enough fibrinogen or it gets stuck in his liver. Ben's fibrinogen counts have been low, but we do not believe he has what David has -- it is a normal side effect of chemotherapy. If it is low, he will need a tranfusion of a blood product called cryoprecipitate. He'll get that tomorrow if he needs it.

The other kid we met in the playroom today, Kieran, is about a year older than Ben. They had a great time playing MarioKart on one of the Fun Centers in the playroom. It is really nice for Ben to be able to meet other kids with cancer.

OK, I think that's about it. Big day tomorrow. Ben can't eat after midnight, which will be hard since he's been eating like a horse.


After there was such an overwhelming response to our request for blood donations, I started telling people that there is no urgency because we have lots of donors. But Ben is needing blood and blood products like cryoprecipitate, so if your blood type is A- and you live in LA, donations in his name at Cedars would be greatly appreciated. And donations elsewhere of all blood types will help others patients in need, so please donate blood regularly. Thanks!

Hello from the Playroom

There is a lot of waiting when you're a cancer patient. First you have to wait to be seen after you check in, then there is waiting between procedures. For example, they often draw blood when you arrive, then you wait for results from the lab so they can decide what treatment you're going to get.

The playroom is a pretty great place, because there are games, books, toys and a great "child life specialist" there to take the kids' minds off of their treatment and the boredom of waiting. It also is great because patients and their families get to meet each other. Today, we met Will, a three-year old who has been treated here since last September, and another boy who has lost his hair (haven't learned his name yet, but he's probably a year or two older than Ben if I had to guess).

Anyway, this place is funded by the Cedars Pediatric Hematology-Oncology Fund, which you can donate to by clicking a link in the margin if you are so inclined. Today we delivered some toys donated by a good friend of ours in my office -- thank you!!!

I will post a report on Ben's status after we are done today.

Wednesday, May 23, 2007

You want photos, eh?

OK, here is a photo of Ben. :)

Back to Work

I am at work now, probably for the whole day. We have hospital visits tomorrow and Friday, so I won't come into the office then. Ben is doing pretty well. This morning, he rode in the car when David went to school and got to see a couple of the teachers including his own. His face is starting to puff up a bit from the steroids, but it's not a huge change at this point.

Tuesday, May 22, 2007

Tuesday Report

Not much to report today. We did not hear anything about the bone marrow results, so we are assuming Ben is above the 5% threshold and will need another biopsy on Friday. I went to work for a little while just to go through my mail. I do think I'll be back to work next week assuming nothing crazy happens.

Monday, May 21, 2007

First Outpatient Visit, Part 3

OK, to add on to what I posted before:

Ben's blood also was tested, and the results were good. His white blood cell count is approaching normal, so he can now have some additional foods like carrots and watermelon. His hemoglobin and other counts also were very good, so he did not need a transfusion today. Thanks to everyone who has donated blood. For those of you outside LA, don't worry about trying to donate remotely for Ben. But please give blood where you are, as there are many other kids (and adults) with similar needs.

We'll be spending a lot of time in the Cancer Center at Cedars. It's a pretty interesting place. All below ground, but there are some places with skylights so you don't feel completely weird. Still, it's kind of like going into a spaceship -- everything is white and modern looking. I imagine we'll get used to it.

They have a playroom there where Ben can wait betweens tests and procedures. The playroom is funded by the Pediatric Hematology-Oncology Fund at Cedars -- you can click the link in the right margin to donate. Believe me, they need money. The computer used by the Child Life Services people who run the playroom doesn't even have enough memory to load a web page with a photo! I think this place is absolutely essential for kids getting cancer treatment. They have a couple of Starlight Foundation fun centers (see my previous post on this -- you can click a link in the right margin to donate) plus books, games, toys, etc. It lets the kids escape the reality of their situation for a little while. And they can be with other kids going through the same thing. Today we met a 20-month old boy being treated for a sarcoma, a 2-year-old (completely bald) being treated for some other cancer, and an older kid. There is some amazing artwork on the walls, all done by pediatric cancer patients. I might take some photos later and post them if that is permitted.

Lots of people have asked us to post some photos of Ben and David, so we may do that eventually. We started off trying to make this site somewhat anonymous since it is open to the public, but I think we've lost the anonymity anyway.

Thanks again to everyone for reading and supporting us. We're past the initial shock of our boy getting cancer, but it's still not easy. Your support really makes a difference for us and we appreciate it.

First Outpatient Visit, Part 2

We were at Cedars for about 2.5 hours. Only partial test results on the bone marrow. There are blast cells present, but they have not finished counting them. If the blast cells are less than 5% of the total cell population, then Ben does not have to have another bone marrow biopsy on Friday. Otherwise, he does. It would be unusual for the blast cells to be below the 5% threshold at this point, so this is not something to worry about. But if they don't get below 5% by next week, Ben will be in a high-risk category. So this is a big week.

I'll try to add some more about our first visit later, but I need to make dinner and help get the kids to bed.

The Outpatient Stuff Begins

This afternoon, we'll go to the Cancer Institute at Cedars for our first outpatient visit. We are hoping to get the results of his bone marrow biopsy today. If they find a significant number of blast cells in his bone marrow, he'll have another intensive week of chemo followed by another bone marrow biopsy. If the blast cells are pretty much gone, he'll have less intensive chemo and won't need another biopsy for three weeks.

We continue to be overwhelmed by your support. Thanks very much to all of you.

Sunday, May 20, 2007

Afternoon Report

A nurse came by today to teach us how to "flush" Ben's PICC line. Basically we have to inject some saline and heparin into each port every day to make sure the line does not get clogged up.

Ben is feeling pretty good. A friend came over to play with him, and he was out in the back yard climbing on the rock wall, going down the slide and swinging on the swings. So that was really great.

I am getting ready to go back to work. I'll start going in a little mid-week, and hopefully be back to full-time next week. I want to ease back in this week to make sure that Nicole can handle all the stuff we need to do with Ben.

Sunday Morning

We all slept in and woke up feeling great! Ben's back pain is pretty much gone, and he's feeling pretty good. We are almost finished opening up the rest of David's birthday presents -- the boys undoubtedly will play with them all day now.

Saturday, May 19, 2007

Post-party, no depression

I'll be at Caesar's all week.

Ben is feeling better. We just played Mouse Trap, a really fun game. We are waiting for a nurse to show up to teach us how to flush Ben's PICC line. We have to do that regularly or it will clog up and need to be replaced.

David's party was great. Thanks to everyone who was able to come!

First Day at Home

Ben is still in a lot of pain from the bone marrow extraction yesterday. Heating pads and tylenol with codeine are helping.

Although David's 5th birthday was last week, his party is today. Ben unfortunately will have to stay home with Nicole's parents while we go to the party. :(

Friday, May 18, 2007

We're Home!!!!!!!!

And it feels great! Ben is tired and grumpy, but happy to be home. We have lots of stuff to put away, sort of like after a vacation. We also have a ton of new gear from the drugstore and a lot of medicine to administer. Ben goes back to the hospital on Monday, but as an outpatient this time. We'll be going there a lot, hopefully just as outpatients. If Ben gets a fever, he has to be readmitted. So he'll have to miss David's birthday party tomorrow -- can't risk exposing him to a bunch of kids and their germs.

Thanks again to everyone for the help, support and encouragement. We'd like to thank a lot of people by name, but we're afraid that we might leave someone out. So Nicole and I thank all of you -- you know who you are.

Links Updated

We have updated the links in the right margin to highlight four charities we hope people will support. There are posts below on each of them, but they have fallen off the front page and we want them available at all times.

The charities are:

Cedars-Sinai Pediatric Hematology-Oncology Fund (Account No. 216620). This is a general fund controlled by the pediatric oncologists here at Cedars. While it may support some research, it is principally used to make life more comfortable for pediatric cancer patients at this hospital. This is a good option if you want to focus on Los Angeles.

Children's Oncology Group (CureSearch). This is the premier research organization devoted to curing forms of cancer that affect children. Ben is participating in a leukemia study sponsored by this group.

Hockey Fights Cancer. Ben and his Daddy play hockey, so we had to include this!

Starlight-Starbright Children's Foundation. This group is devoted to making life more comfortable for children with serious illnesses. The "fun center" they supplied to Cedars really made it easier for Ben (and his parents) during his hospital stay.

Thanks very much for your generosity.

Sorry for the confusion

I made a couple of posts using my Blackberry, and somehow the order got reversed so the content was inaccurate. So let me summarize what is going on:

Ben is having a lot of discomfort from the bone marrow extraction, so much that he's been given some morphine. We were told earlier that he might need to stay another day, but now we are in the process of being discharged! We have a mountain of prescriptions and instructions, and we are starting to pack.

I asked Ben if he wanted to say anything on his blog, as he said, "I still want more presents"! LOL

Thanks again to everyone for your support. We will continue to keep you apprised of Ben's progress from home. I'll be going back to work fairly soon I hope.

Waking up

Everything went well this morning. He's waking up and is looking forward to some lunch! We should be back in the room in 15 minutes or so. No official word yet, but we believe we will be discharged today.

Ben says: "I'm going home!"

Morning Update

We are waiting for Ben to be taken for his bone marrow biopsy and spinal tap, which are scheduled for 10 am. He has to fast for it, so he's hungry and a little grumpy.

His white blood cell count is down a little today. We are hoping this won't prevent a discharge today. Keep your fingers crossed!

Thanks to everyone for the comments and donations. We read all of the comments to Ben, and they really cheer him up.

Another reason to love the NHL

From the Children's Oncology Group Website:

The National Hockey League and CureSearch are working together to increase public awareness about childhood cancer and childhood cancer research, and to generate funds to support the work of the Children’s Oncology Group.

Since 1998, the NHL Hockey Fights Cancer program has contributed almost $7 million toward cancer awareness and research. The goal of the partnership between CureSearch and the NHL is to increase the level of funds and awareness for childhood cancer research.

Thursday, May 17, 2007

Starlight Starbright Children's Foundation

During his hospital stay, Ben has spent a considerable amount of time playing with a Nintendo Gamecube on a "Fun Center" supplied to Cedars by this foundation. The center also has a DVD player with movies. A link to the Starlight foundation's site, which shows you these fun centers and tells more about the organization, is in the right margin. (That is not Ben in the photo.)

Many hospitals are on waiting lists to receive these centers, so we have started a web page on the Starlight site seeking donations. Our goal is to raise $10,000, and we are 10% of the way there. If you want to help, please click this link:


Still on track

We are expecting to go home tomorrow after Ben has another bone marrow biopsy and interthecal (spinal) chemo. Still could change, but we are looking good at the moment.


I installed some software yesterday to track the number of people viewing this blog. It records how many times people visit, where they are viewing from, and other stuff like that.

Thanks to Aunt Stefanie, Tel Aviv is giving Los Angeles a run for its money in terms of number of viewers. People also have checked out the site from Ankara, Turkey; Hong Kong; London, England; and Bangalore, India! LOL

Pills, pills, pills

Ben has to take lots of pills now, something he's not had to do before. He is still working on swallowing them, so for now we are crushing them and administering in big spoonfuls of chocolate pudding! Not so bad that way.

If anyone is wondering about the effects of the steroids Ben takes every day, he has gained a little weight and his face is puffed up a bit. Here's a recent photo.

Wednesday, May 16, 2007

More progress

The IV line was disconnected from the PICC line this afternoon. This means that Ben can wear regular shirts without assistance from a nurse! The PICC line is covered by a little mesh sleeve so it doesn't bother him as much -- basically it is a port for drawing blood or administering drugs intravenously.

Ben is feeling good. We're just watching TV.

Thank You!

I have put Scott in charge of the site...but I just wanted to say thank you to everyone for your kindness, love and support. I don't know how we could get through this without you!

Shots are done

Boy, that sucked. Nicole and I had to hold him down and he screamed the whole time. But they are done. He'll feel better soon, I'm sure. Probably harder on Nicole than on Ben.

Nicole is going to stay here while I get David from school. Then it is my turn to spend the night with Ben.

Morning update

He is no longer on antibiotics or the neutropenic diet. This means he can have fresh fruits and vegetables, among other things.

This afternoon he has to get large-volume injections in both thighs, so that's not going to be fun. But he's a tough kid.

Ben's first post

Thanks to everyone in my class for the card! It is up on my wall.

I am going for a walk now. I found a way to roller skate with my IV pole! Weeeeeeeeeeeeee!

More good news

Dr. Hurvitz was just here. We are on target for going home on Friday. If not Friday, should be Monday. No guarantees still, but he is doing GREAT! Maybe all of these prayers are working . . .

Also, they are going to stop giving fluids by IV if Ben can drink 2 oz of water per hour. That's great too. Thanks again to everyone for the support.

Tuesday, May 15, 2007

Treatment, Part II

Here is some information on some of the chemotherapy drugs they are giving Ben. Unfortunately, I have not figured out whether and how I can post the information sheets they gave us at the hospital, so I am posting links to some web sites with information on the drugs. Many of these sites do not appear to be designed for laypersons; I've tried to pick ones non-doctors can read (the first is the least reader-friendly). (Remember that you get what you pay for with this blog! :) )

Intrathecal Cytarabine:



PEG Asparaginase:

Intrathecal Methotrexate:

He also gets antibiotics and various drugs intended to control side effects. Not sure what all of them are, but he gets Zantac to protect his stomach, something else to protect his kidneys, and others too.

I probably won't post the actual protocol unless someone really wants to see it. But here is a good article on chemotherapy in general:

The Longer Term

We had a preliminary conversation with Dr. Hurvitz, our oncologist, about Ben's future after we leave the hospital. He won't be able to go back to school before the Summer, but chances are very good that he can return to school in the Fall. Because his defenses against infection are weakened, he can't be exposed to all of the germs in a classroom right now. If he gets sick after leaving the hospital, we have to bring him back.

So we can count another blessing -- the timing was pretty good.

Another good place to donate

Cedars-Sinai Pediatric Hematology-Oncology Fund #216620
c/o Steven Arrighi
Department of Pediatric Hematology-Oncology
Samuel Oschin Comprehensive Cancer Institute
Room AC1066
8700 Beverly Blvd.
Los Angeles, CA 90048
(310) 423-0612


I think there are probably some more medically precise explanations of this on the sites in the right margin (and elsewhere), but here is a dumbed-down explanation. I was going to make a bunch of disclaimers here, but our oncologist just read the post and confirmed that it is right. :)

There are several different types of blood cells, including "B" cells, "T" cells, and some others. Blood cells, including B cells, are made in the bone marrow. You start with the now-famous "stem" cells. There is maturing and cell division. You then get some intermediate cells which mature and divide. Then eventually you end up with functional B cells.

Ben's cancer exists in the intermediate cells between the stem cells and the mature cells. You have a bunch of non-functional "pre-B" cells dividing like crazy and squeezing the healthy cells out. So what we are doing is killing all of the cancerous "blast" cells. Once that is done, the healthy cells can grow and he'll be OK. It's kind of like pruning a dying tree or cleaning up an overgrown garden.

I will try to find some links to a better explanation and post them, but hopefully this helps a little.

Some Great News

No guarantees, but our oncologist just told us that Ben may be able to go home as early as Friday! He is doing great.

I found out what "pre-B" is and will take a crack at describing it in plain English later.

Questions from Ben

This morning, he asked me, "how do so many people know me and why do they like me so much?"


I'll read to him any comments people post.

Aunt Stefanie, part 2

Dear Ben,

Your Aunt Stefanie tells me that you’re stuck in the hospital for a while. I spent nine years in jail (because I wanted a free country, not because I did anything wrong), so I know how annoying it is to not be able to go outside when you want. But I am sure a hospital is much better than a gulag!

I want you to know that I am thinking of you and your family, and that I know that you, your parents and David have all the strength and fortitude to get through this difficult time. As I learned the hard way, keeping your optimism and faith can enable you to not only overcome the most horrible situations, but can even turn them into a useful experience.

My thoughts and prayers are with you.

Refua shleimah,

Natan Sharansky

Aunt Stefanie is working overtime!

My sister Stefanie lives in Jerusalem and works at an academic research institute called The Shalem Center. She's been working hard for Ben -- check out these e-mails he just got!


Your Aunt Stefanie told me that you're in the hospital. As the former head of Israel's army, I spent many years fighting bad guys on Israel's behalf. From what your aunt tells me, I have no doubt that you're also a serious fighter and that you're going to do great while you're in the hospital and beyond.

You have my best wishes and prayers.

Yours sincerely,

Lt. Gen. Moshe "Bogie" Yaalon

(I am posting with Blackberry, so the next e-mail will be posted in the next entry. Thanks, Stef! We love you!)

Monday, May 14, 2007

Open Forum Answer #1: Advance Signs?

Question: My question is, were there any advance signs that Ben was sick, or did he just go to school normally on Tuesday and get sick suddenly? It is frightening to think that this can come on so quickly.

Answer: He had a fever and was staying home, but we did not think anything was seriously wrong. There were some earlier signs of leukemia, but we did not recognize them at the time. He had some pain in his legs which we thought were growing pains. He was a little more fatigued and grumpy than usual. But we didn't think much of these things when they happened.

The fever, paleness and weakness before we took him to the hospital were the first things that seemed extraordinary. A group of residents told us that leukemia does present acutely as it did here. Fortunately, Ben is getting treatment in a timely manner and his prognosis is very good.

More on Donating

Our oncologist is going to give me details on a fund they have here at the hospital to help pediatric oncology patients. I'll post the info when I get it. It's not research-focused, but rather is used to buy stuff for kids to play with and things like that.

Bone Marrow Test Results

Good news: the bone marrow biopsy confirmed the diagnosis of "pre-B" ALL. This is good because "pre-B" is the best kind of ALL to get according to our pediatrician. Once I understand what it is, I'll explain it.

Ben is sleeping now. Had a tough day. Was very tired from not sleeping much last night. Had some stomach pain which went away after using the bathroom -- they will give him a stool softener.

I'm going to try to get some sleep too. Nicole might start posting here soon.

Questions about gifts and donations

Lots of people have asked via e-mail what gifts Ben would like and where they might make a donation for leukemia research.

As far as gifts go, Ben is pretty easy. Books, arts and crafts stuff, toys, stuffed animals, sports stuff, anything for a six year old boy is great. Stay away from Ben 10 and Power Rangers, as he and David have just about every toy made to date. They have a Leapster but not a game system (we still have a Nintendo 64 which we have not let them play with). They love PC games.

UCLA or Red Wings items will be rudely returned. ;)

As far as donations, Ben is participating in a study sponsored by Children's Oncology Group, so that's a good organization to support. You can access their web site and some other organizations involved with leukemia research using the links in the right margin.

Thanks very much to everyone who has expressed interest in this stuff. It is very kind.

Neat e-mail

We have received lots and lots of great e-mails. Here's a good one we got today:

Dear Scott,

Your sister Stefanie is a close friend of mine here in Israel, and she's been updating me on Ben's situation since his diagnosis. I wanted to let you know that my thoughts and prayers are with you all, as well as my wishes for ongoing strength during the difficult road ahead. I also, however, want you to know how optimistic I am for you: I am confident that your son will make a full recovery, and go on to live a fully healthy life. A neighbor of mine threw a party for her five-year-old daughter several months ago on the completion of her chemotherapy treatment for the same type of leukemia Ben has – she is now in complete remission, and a bubbly and happy little girl. With God's help and those of your excellent doctors (I'm from Los Angeles, and I know that Cedar's Sinai is the best hospital around), Ben will certainly pull through.



First Blackberry Post

We are having a DSL line put in the hospital room, but I thought I would try to post with my Blackberry.

Great news this am -- apparently Ben is responding really well to the chemo and he might get to go home a bit ahead of schedule. They could not find any "blast cells" (the cancer cells) in his blood today! This does not change the protocol for his treatment, but it is great news.

Ben is playing video games and eating candy all day long. The walls are starting to get covered with cards and pictures he's received. All in all, things are going pretty well.

I just asked Ben if he wants to say anything on his web site, and he said "no, can you please stop talking to me?" LOL

Sunday, May 13, 2007

Open Forum

Those of you who know me well know how much time I spend on the Internet. I spend a lot of time on some message boards, plus I read a lot of blogs and web sites. On a USC Football blog I read from time to time, the author has an "open forum" feature where he lets people post questions which he then answers later. So let's try that now.

If you have a question, post it in a comment and we will try to post an answer for you.

Treatment, Part I

Some of you have asked for really detailed information on Ben's treatment. I had hoped to scan some of the protocols and just post them, but I don't know if I can do it or not. I will eventually post a lot of detailed information on exactly what drugs are being used and when, but for now let me give a little overview.

Chemotherapy is a pretty intensive thing. Ben is getting the stuff that kills the cancer cells, plus stuff that controls the side effects of the stuff that kills the cancer cells, and probably some other stuff too. In addition, he is having his blood and urine tested very frequently so the doctors can monitor the progress of his treatment.

In order to allow this treatment without sticking Ben with needles ten million times a day, Ben was fitted with a "PICC" line. "PICC" stands for peripherally inserted central catheter. Basically it is a semi-permanent IV which runs from his left bicep into the superior vena cava. They can draw blood out of it, put IV drugs into it, and give blood or platelets through it. Pretty cool stuff. He'll have it for a long time, I think for like a year. It bugs him, but it's a lot better than shots and blood draws all the time.

So far, everything is going very well with his treatment. The "induction" phase of chemotherapy lasts for 5 weeks. I'll give some details of the treatment later.

Right now, Nicole and I are taking turns staying overnight in the hospital with Ben while the other one goes home with David. David is still going to school and we are trying hard to keep his schedule as intact as we can.

What Ben Has

Although we will not have the results of Ben's bone marrow biopsy until tomorrow or Tuesday, our doctors are confident based on blood tests that Ben has pre-B Acute Lymphoblastic Leukemia, or "ALL." If you're going to get cancer, this is a good type to get. When we were kids, just about everyone who got this cancer died. But today, the cure rate is higher than 90%. Also, there have been great advances in chemotherapy in terms of controlling side effects. Ben has been getting chemo for the last few days, and he has only thrown up once. He might not even lose his hair! (If he does, Uncle Chris and I both have committed to shave our heads -- feel free to join us!)

Here is some introductory information on ALL:

You can get a lot of information if you keep clicking through the links.


If you are reading this Blog, you may already know our son Ben. He is six years old and will turn seven in August 2007. We think he is one of the sweetest, nicest kids on earth.

On May 8, 2007, we found out that Ben has leukemia. He had a high fever over the weekend which we thought was just a cold or flu. On Sunday night, when he and his brother David (who turned five today) were in the bath together, we noticed that David's skin was pink but Ben's was pretty yellow. So we called the doctor the next morning. They could not see him until Tuesday, May 8, so that's when we brought him in. We did not think anything was seriously wrong with him at the time.

Ben's doctor ran some blood tests which showed he was severely anemic. He was admitted to the hospital the same day, and it did not take long for us to learn that he has leukemia. I think we were told that evening, although it may have been the next day.

We have tried to keep people informed about Ben's progress by phone and e-mail, but there are so many people who we want to keep posted that I thought a blog would be a good idea. This way people can get as much or as little information as they want. I hope people find it useful.

Here is some preliminary information: Ben is being treated at Cedars-Sinai Medical Center, His oncologist is Dr. Carole Hurvitz, We expect to be in the hospital for at least a couple more weeks.

I'll add more information later tonight.