Thursday, January 31, 2008

Small bump

Well, we were already scheduled to go to the hospital today after I picked the boys up from school...but we wound up going a little earlier than planned. I received a call from the school letting me know that Ben was feeling really terrible and although they had not taken his temperature he felt very hot. I raced over to the school and picked up both boys and took them over to the Cancer Center. The good news is that Ben's numbers are pretty good - not neutropenic. But he had a temperature of 101.3.

They decided to hold off on the chemo (Vincristine) and also the steroids which were supposed to start today. The Methotrexate that he receives orally every Thursday is also going to be put on hold. He will still take the Mercaptapurine and they put him on antibiotics. We will take him back to the hospital on Saturday for more bloodwork to see how he is doing - don't want those numbers to go back down! If all goes as we hope he will get the Vincristine next Thursday.

Wednesday, January 23, 2008


I realized that it has been a long time since we have made a post. Both Ben and David have been home in bed with the flu. I guess I didn't use enough Lysol last week when I was sick. David stayed home yesterday and today and Ben just today...but I have a feeling they will both be home again tomorrow. They are sad because tomorrow is a big bake sale at the school to save the rainforest (we have many cupcakes ready that look like ladybugs, butterflies and other colorful bugs) and they will probably miss it but they are trying to get better so they can go on a field trip on Friday.

Everything has been pretty calm. Ben and David have both been adjusting to being back at school and having things be "normal". Ben has been great with his medicine and although the adjustment back into normal life has had a couple of bumps he truly has been doing great. He just came up to me this evening and said, "can you believe how much hair I have?!"
Scott is out of town for his sister's wedding (Congratulations Stefanie and Shlomo!) so we miss him but otherwise things have been pretty uneventful - what a nice change!

Friday, January 11, 2008

Some photos

Ben is healthy and back in school. The following is typed by Ben:

"Hi! I am helthy!" "Hooray"

Back to me typing now:

Ben's hair is growing back quickly. Photo above. Also attached are some photos from the Kings game we went to. One is the boys with Mike Cammalleri, a Kings star player. And some others taken in the penalty box, including one of a little note left for the players by the boys!

Wednesday, January 9, 2008

Home Again

Ben had a great day at school on Monday, but unfortunately he has a bit of a cough so he stayed home yesterday and is home again today. The great news is that he does not have a fever, just a nagging cough and a little bit of a stuffy nose. Poor kid. He fights to make it into Maintenance so that he can get back to school and now is side-lined with a cold. Today will be a day of rest, snuggles, honey and chicken soup so hopefully he can get back to his friends tomorrow!

Monday, January 7, 2008

Back to School!

Ben and David went back to school today. Unless he gets sick, Ben should be able to go to school without any significant interruptions now.

His hair is really starting to come back in. He still looks bald from a distance, but his head is covered with blonde peach fuzz if you look up close. :)

Saturday, January 5, 2008

Special Kings Game

We are at the Kings-Flames game, sitting in the penalty box next to David Courtney, the arena announcer. We get to stay through warm-ups, then I'll ride the Zamboni. After the game, we get to go to the locker room. All part of a package I bought at a fundraiser last year.

So we're having a great time!

Thursday, January 3, 2008

Maintenance Day One!

We are in the Procedure Center for the first day of Maintenance. Ben got Vincristine and is getting intrathecal Methotrexate, then they will remove his PICC line! This is awesome, as he'll be able to bathe, swim and otherwise not have to bother with tubes sticking out of his arm.

This is the last stage of Ben's chemotherapy, but it will last for three years. Many fewer hospital visits, and most medication will be oral.

Woo hoo!!!

Wednesday, January 2, 2008


We just found out this morning that Ben's numbers are high enough to begin Maintenance tomorrow! Woo hoo!
Although there is still a long road ahead, we still feel this is a graduation of sorts. If all goes as planned, the upcoming years of treatment should be much easier than what Ben has just had to go through. Ben will be getting a spinal tap tomorrow morning as well as Vincristine and then his PICC line will be removed. We are all smiles over here!

Please Support Child Life Services at Cedars!

I think you all know that we have selected the Pediatric Hematology-Oncology Fund at Cedars as our primary cancer-related charity. You can get information about the Child Life Services programs supported by that fund here. These programs are really essential for kids going through cancer treatment -- they make the hospital and the treatments much easier to deal with.

Monetary donations can be made using the link in the right margin.

For those of you who may be interested in making in-kind donations, here's some information:

Hospitalized children, toys and you!

The division of Pediatrics Hematology Oncology at Cedars-Sinai Medical Center is grateful to the many community members, service groups and businesses who generously donate toys to our pediatric patients. Donations keep our activity rooms supplied and make holidays, birthdays and other special celebrations possible. Donated decorations add cheer to activity rooms and patient care areas. You and your group can help by following our recommended toy safety guidelines, as they protect our young patients.

Toy Safety Guidelines

v All donated toys must be new and in the original packaging to assist us with infection control. This includes stuffed toys that have not been played with but have been on display. They can collect dust and may contribute to allergies.

v Toys should be sturdy and should not be made of glass or brittle plastic. They may break and leave sharp edges. Toys should not have parts that can pinch fingers or toes or catch hair.
v Stuffed animals and toys can only be used if they are filled with fabric or solid foam. Small pellets, beans or shredded foam should not be used as filler. Please avoid toys with detachable parts (like button eyes) which can be removed and swallowed or inhaled.
v Fire regulations forbid electrical, spark-producing, or friction-producing toys.
v Toys that are painted or contain glue or paint must be non-toxic.
v "Humorous" medical toys and games may cause fears and misconceptions and may be inappropriate.
v Decorations must be non-denominational, flameproof, non-electrical and unbreakable.
v Please note … we are unable to accept any food items or latex balloons.

All toys donated are to be left unwrapped, however, we encourage you to donate gift bags, tissue paper, wrapping paper and gift tags. This allows us to best match the gifts with the patients.

Thank you, in advance, for brightening the lives of ill children throughout the year.

To schedule delivery of your donation please call: Joanne B. Ordono, CCLS at 310-423-3186.

Popular favorites for all ages

Infants and Toddlers: Sassy brand Music in Motion mobiles (available at ~ Fisher Price Ocean Wonders Aquariums ~ infant music boxes ~ busy boxes ~ non-breakable crib mirrors ~ cradle gyms ~ rattles ~ musical toys ~ soft rubber dolls ~ cloth, soft vinyl or heavy cardboard picture books ~ small balls ~ lullaby and soft music CDs ~ push/pull/talking toys

Pre-Schoolers: wooden puzzles ~ Fisher Price toys/games/medical kits ~ Playskool toys/games ~ play food and dishes ~ musical instruments ~ play tools ~ baby dolls (multicultural) ~ Play Doh and accessories ~ books ~ Tonka trucks and small play vehicles ~ balls

School Age: board games (Sorry, Trouble, Monopoly Jr., etc.) ~ Etch-a-Sketch ~ puzzles ~ Magna Doodle ~ craft/paint/activity sets ~ 60 and 100 piece puzzles ~ models (snap together type) ~ art supplies ~ dolls (Barbie & Super Hero - multicultural) ~ I Spy books ~ toy dinosaurs and insects ~ cars ~ Nerf ball playsets ~ velcro darts ~ Matchbox cars and trucks

Teenagers (area of high need): advanced craft & paint supplies ~ model kits (non-toxic) ~ board games (Monopoly, Scrabble, Battleship, Life) ~ jewelry making kits ~ disposable cameras ~ handheld electronic games ~ cd players with headsets ~ advanced puzzles ~ playing cards ~ sports supplies ~ stationary sets ~ blank journals and scrapbooks ~ magic supplies ~ gift certificates to clothing stores, music stores, book stores, toy stores ~ movie tickets

Audio/Visual Items: recent release DVD movies rated G, PG or PG-13 ~ Children/Adolescent music CDs (nothing with a parental advisory please) ~ Polaroid 600 Plus film ~ Relaxation DVD/CDs (scenery to soft music)

Legacy-building Activities: Clay Keepsake Memory Tin ( ~ Precious Imprint Tin (

Video Games / Electronics. (area of high need): PSP & games ~ iPod & iTune gift cards ~ other handheld games ~ Nintendo Game Cube games. *Please note that games must be rated for all ages and be non-violent.

Things you can make: patient dolls ~ activity bags ~ comforters & blankets ~
Please contact the department for specifications.

We are always in need of activity books (word searches, crossword puzzles),
Play-Doh, coloring books, crayons, markers, watercolors, stickers, construction paper, tape, glue sticks, safety scissors, colored pencils, beads and other arts & craft materials, and seasonal decorations.

Thanks for your support!