Wednesday, December 31, 2008

Ben's New Year's Thoughts

(This post is by Ben - we forgot his username so we are just typing under my account. Oops!)

I'm so excited that it is the last day of 2008! I am one year closer to being done with chemo!!!!
Happy New Year!


(We are off to the hospital for Vincristine and a blood check. We will give an update later.)

Sunday, December 21, 2008

Well, they're fun to catch anyway . . .













We went fishing today. Nothing too challenging -- a little artificial pond in Anaheim where they stock tons of trout and starve them so little kids can catch something easily. Ben and David caught three big trout, which I then prepared in three ways for them to eat (cajun style, battered and miso/panko). No takers, so Dakota and I had a feast! LOL

Also attached is a photo from the day when Ben took Dakota to school for "pet share." Happy holidays to all!

Sunday, December 14, 2008

Ben the Playmaker

Ben had his best hockey game of the seaon yesterday. His team beat the best team in their league 4-1, with Ben chipping in THREE assists! He also blocked a shot and played with tremendous confidence. He won a bunch of battles for the puck and had a great time playing. Pretty cool stuff!

On the cancer front, he's feeling great!

Thursday, December 11, 2008

Karate Kids

I just need to brag for a moment. The boys tested for their yellow belt in their karate class yesterday. They both passed! Yeah! Then with the whole class and all the parents standing there watching, the instructor singled Ben out as the best student of the class. The instructor said that he will be bringing Ben a special prize for all his hard work this past semester.

After the festivities were over and I went to sign the boys out, the instructor commented on how amazing my boys are. They are both completely different but each wonderful in his own way. He also said that Ben has a real talent for karate. His discipline is amazing for an 8 year old boy and he also noted that nothing seems to phase him. Ben remains calm and under control and is just a complete joy to be around. :)

As you can imagine, Ben was just beaming the rest of the night. He is so proud of himself!

Thursday, December 4, 2008

Another Spinal Done

Ben had a spinal tap this afternoon. The procedures are usually scheduled in the mornings for kids but due to some scheduling issues this one needed to be in the afternoon. Ben was a pretty good sport about not being able to eat or drink anything - a trooper as usual.

The PICC center was very busy and a bit behind schedule. Because Ben was so eager to get things started Ben's amazing and wonderful nurse, Karen, got a room ready for him so he wouldn't have to wait any longer. They take such great care of us!

There were some issues getting him asleep. Due to the fact he gets weird and terrible hallucinations from the Ketamine the doctors tried to just give him Versed. During his last spinal it took 3 ccs (or whatever the measurement was) to put him out...but this time he was extremely stubborn! Even after 6 ccs he was still chatting away with the doctors and nurses. They finally gave him a very small dose of the Ketamine and it knocked him out right away...but only for a few minutes and then he was very chatty again. It is very strange as a parent to be talking to your 8-year old and have them be totally wasted! Luckily he came out of it pretty quickly and we didn't have to stay at the hospital nearly as long as I feared we would be there. We are back home and Ben is feeling great and so excited to be able to eat.

We just received a call from Karen letting us know that his numbers look great. White blood count is 3.6, Polys 2117, hemoglobin 13.3 and platelets at 229,000. Because of the good numbers they are increasing his medication doses up to 75% of normal levels (they had been reduced down to 50% last week because of his ear infection and low numbers).

All is good here!

Thursday, November 27, 2008

A Very Happy Thanksgiving

Many of you will remember that we spent last Thanksgiving in the hospital. We did have turkey dinners from Jerry's Deli across the street, but it still wasn't the greatest.

This year we were worried about a repeat since Ben was neutropenic again, but he's recovered and we're spending Thanksgiving with Nicole's family. We consider ourselves very fortunate and wish all of you the best, especially those of you we'd like to be with today.

Wednesday, November 26, 2008

Cleared for Thanksgiving

We went to the hospital this morning and found out that Ben's ANC went up to 990. This means he can start back up on his medications...but only 50% of normal amounts. The doctor also said he can go to the family Thanksgiving celebration and go back to school on Monday!

Tuesday, November 25, 2008

Break from the Hospital

We had an appointment to go into the hospital yesterday...but they cancelled on us :)

Ben is not able to go back on his cancer medications until his ANC is up above 750. Because his numbers were low and they just need time to come up the doctors decided they don't need to see him until tomorrow morning! Ben was thrilled! We need to treat him like he is neutropenic, even though number was slightly higher than the neutropenic number on Sunday, and keep a close watch on how he is feeling and his temperature. Thankfully, he has been feeling great. David has been home from school with a cold so the three of us have just been hanging out at home. Ben doesn't like the oral antibiotics, but they are much better than needing to go to the hospital everyday. Also, the low ANC numbers mean he hasn't been able to take his Mercaptapurine or Methotrexate. The silver lining to this is that he can eat whenever he wants at night - he just loves the fact that he can grab a snack whenever he feels like it!

Sunday, November 23, 2008

Up Down Up Down

Yesterday's hospital visit was a bit longer than expected. First, Ben's IV line just wouldn't work and was extremely painful for him. They were not able to draw any blood through the line so had to do it the old fashioned way. Thankfully they only needed enough for a CBC so could get away with just a finger poke. Ben's ANC number fell back down into neutropenic range (481) but thankfully for the nurses in the Infusion Center they called the doctor and asked whether they could switch him to oral antibiotics since it was so close to 500 and the doctor agreed!

We just returned back home from the hospital and we have the good news that Ben's ANC went above the neutropenic range to 671 so he is able to stay on the oral antibiotics so no re-insertion of the IV! Yeah!

We go back again tomorrow and they will check his blood again and give his ear another examination. We hope that his white blood count goes up and his infection looks better so maybe we can get done with these daily visits before Thanksgiving!

Friday, November 21, 2008

Good News

We went to the Infusion Center this afternoon as planned, David came along because he stayed home from school today. He said that he didn't feel well this morning - I think it was more that he needed some attention. When we first arrived at the Cancer Center the boys were treated like superstars as usual. They had about 8 nurses huddled around them - it was very cute. Then they met Mr. T who gave them a toy that repeats about 6 different Mr. T sayings. They both liked it...but David thinks it is hysterical and keeps hitting the buttons over and over and over!

Now to the great news - Ben is not neutropenic anymore! His white blood count and ANC are still pretty low, 1.7 and 765 respectively, but going in the right direction! The doctor said his ear is still very infected so we will need to make sure we watch him closely for any temperature, chills or other signs that he is not feeling well as that may mean that bacteria has entered his bloodstream and he will need to be admitted...but hopefully that won't happen and he can just finish out the antibiotics on an outpatient basis. He will receive antibiotic infusions over the weekend but won't have his ear examined again by the doctor until Monday so that is when we will find out what is next.

Thursday, November 20, 2008

Still Home!

Ben was very emotional today as he REALLY did not want to be admitted to the hospital...and thankfully they decided not to admit him for the time being.

His temperature keeps creeping up into the danger zone...but always quickly comes back down with the aid of Tylenol. The highest it has gone is 100.9 (he is at risk of being admitted if higher than 100.4). Ben's ear is still very painful, but both doctors who looked at it said, "Wow, no wonder you are in so much pain!" It is very red and infected and giving him a lot of grief. As Scott noted in an earlier post, the most troubling factor in this is the low white blood count (1.2) and ANC (384) so he really cannot fight off anything right now. They took additional blood in the Infusion Center for a blood culture so they can see if any other infections are attacking him.

We will be going back to the Infusion Center for at least the next few days where they will continue to do more tests and give him antibiotics. We will keep hopeful that a hospital stay will not be required. As Ben has repeatedly pointed out in the past week - he spent his last Thanksgiving in the hospital and he really does not want to do that again!

We will be sure to keep everyone posted of further developments over the next few days.

Good news

Ben and Nicole are on the way home! No IV pump either! Ben has appointments in the Infusion Center for the next four days, and they left the IV in so they won't need to stick him again. Nicole will post more details about what's going on later tonight.

Phew!!!!

Bump in the road

Ben is in the Infusion Center at Cedars with Nicole. He is neutropenic and getting IV antibiotics and pain medicine for an ear infection. We are hoping he is not going to be admitted to the hospital and that he can come home with the IV pump instead, but we'll see. I'll try to keep you posted on developments.

Sunday, November 16, 2008

He shoots, he scores!

Ben had his second goal of the hockey season yesterday! It was a pretty impressive one, too. He got the puck above the circles, drove hard into the slot and went five-hole before the goalie could react. (For those of you who don't follow hockey, that means he skated with the puck to the front of the net and shot the puck in between the goalie's legs). After he scored, he played with a lot of increased confidence. It was really cool to see!

Ben was playing against his good friend Asher's team. Ben's goal tied the game 3-3, but then Asher scored the game-winner. I got the puck, and we're going to saw it in half and get them both to sign each half to commemorate the big day.

David played his last soccer game of the season yesterday. He almost scored, hitting the goalpost with a great shot. He also made some very good plays on defense and had a lot of fun, which is the important thing. Today we have the end-of-the-year picnic and awards ceremony.

Everything is good health-wise. Thanks for reading!

Wednesday, November 12, 2008

Feeling Better

Well, I think Ben is finally getting over his never-ending cough. He was not feeling well last week and missed some school and had the normal fever scares that go along with that. Of course getting chemo on Thursday certainly didn't help him to feel any better. In addition to the cold and chemo he was also on his steroids from Thursday to Monday so he just was not feeling good physically or emotionally.
His appetite is still pretty big from the steroids, but the moodiness and exhaustion are going away so he was in much better spirits this morning! Yeah!

Friday, November 7, 2008

Chemo and Report Cards

Ben had chemo yesterday (Vincristine) and did a great job as usual. Our usual nurse was out so we needed to wait until today to receive the results from his bloodwork...but we were told that everything is fantastic. They did not provide the actual numbers (I can get them later), but everything looks great and they are very happy with Ben's progress. Ben also started his steroids yesterday morning. I don't know if the steroids are causing his current mood or if it is from this cold he cannot seem to get rid of...but I hope it is over soon.

Ben can't seem to shake his cough and runny nose. Unfortunately, he will probably have to miss hockey practice tonight - this was Ben's call based on comments from the nurses and how tired he is today. He is hoping that if he really rests up he will be well enough to play in his game tomorrow.

We went to Parent/Teacher conferences this morning and came out all smiles, as usual. We have the two most amazing boys! We could not be more proud of them!

Thursday, October 30, 2008

Scott is 40!

Today is my 40th birthday. Nicole and the boys made me an incredible DVD with a bunch of home movies and photos taken over the past several years. In addition to lots of birthday parties, play sessions and puppy and kitten craziness, the DVD really brought back memories of what it was like to go through the intense phases of Ben's chemo. There were lots of photos of movies of Ben losing his hair, the boys cutting mine off, and Ben and me doing things as bald guys. Needless to say, it was pretty emotional and I cried a lot.

Thanks so much to everyone for your support during this difficult period in our lives. Your thoughts and prayers have meant the world to us.

Saturday, October 18, 2008

They shoot, they score!

Both fighting a cough that doesn't want to go away, Ben and David were terrific today in their games. Nicole's parents were there to see both games, which was a nice treat for the boys and for them.

David, playing soccer, started things off scoring his team's only goal in a 1-1 tie. He came very close to getting a second goal and also played great defense. He's got amazing speed and is very competitive out there -- backs down from no one!

Then Ben, playing hockey, scored his first goal of the season! He was incredibly excited, as there are some other kids on his team who have been playing longer than him and have more developed skills. Ben really is getting better from week to week. He's been very good at keeping the puck in his team's offensive zone and driving to the net. His team won 9-0!

The boys tell me that it's OK if I don't score a goal in my hockey game tonight, but I'm hoping for a family hat trick!

Friday, October 10, 2008

Numbers

Ben's numbers were great yet again! Hemoglobin 13.8, Platelets 289,000 and ANC 2607. Since I had to miss this hospital visit due to David's bad cough (we didn't want to subject the patients at the cancer center to a coughing kid!) I had to get the full rundown from Scott, Ben and the oncology nurse. Everything continues to be great and the doctors and nurses are happy with how things are going so things remain calm. Yeah!

Ben started his steroids for the month yesterday morning so we are hoping that his emotions aren't too tough on him this weekend.

Thursday, October 9, 2008

Another Infusion Done

I took a turn taking Ben in for his Vincristine today. I was really impressed with how he handled it -- he's a really strong, brave kid! I understand from Nicole that his numbers were great -- she may post some details on that later.

Saturday, October 4, 2008

Watch out, David Beckham!

Looks like there is a new soccer superstar in Los Angeles. David had a hat trick today, 3 goals plus an assist, as his team won 6-0 (unofficially, of course -- they don't keep score in this league). He also had a bunch of great defensive plays. His team is really improving from week-to-week, so the coaches are very pleased.

Ben was a great brother, cheering wildly for David from the sidelines. Ben plays hockey this afternoon.

Friday, October 3, 2008

Fight leukemia by playing video games!

Check out this great fundraiser for the Leukemia and Lymphoma Society. Ben and David will!

http://lls.play2cures.org/

Sunday, September 28, 2008

Weekend/SportsCenter Update



Well, we've been very fortunate because Ben's temperature has stayed under the hospitalization threshold. He still has a bad cough, but it seems to be getting better.

We let Ben play hockey yesterday despite the cough because he was playing against his best friend's team and he desperately wanted to play. (We held him out of practice on Friday.) His temperature was totally normal, so we decided to take the risk. He had a great time playing, and proved to be quite the playmaker. Made some very nice passes to his teammates, a couple of which nearly turned into assists. His team won the game like 7-2 or something like that. We didn't take pictures yesterday, but I've attached a photo of Ben's last game. He's in the center of the picture in purple.

David also had a game this weekend, but he's playing soccer. He scored his team's only goal and also made some great plays on defense, catching kids from behind to ruin breakaways twice! He's really aggressive and looks like he's going to be a pretty good player. This is a beginner league with no goalies and they don't keep score, but David was very cognizant of the fact that the other team scored like 10 goals. LOL Here's a photo from warm-ups of David and one of his coaches.

Nicole, Ben and David are going out for lunch and I'm going to work. Thanks for reading!

Thursday, September 25, 2008

Never ending cough

Ben continues to stay home from school with a bad cough, a little bit of a stuffy nose and a low-grade fever. So far the highest it has gone is 99.7, but in our minds, still too close to the 100.4 that could wind him back in the hospital.

Ben has been very bummed to miss so much school this week and of course all of the extra-curricular activities planned for the week (and also the fact that we had to cancel our trip to Hawaii because of this and other issues). Of course, the bigger concern is that he really doesn't want to end up back at the hospital (then he always adds that he doesn't want to go back even though he LOVES the food, the FunCenter and the fact that he is "the boss"). He is really upset that he has to miss his normal acitivities like karate (he wasn't able to earn a ninja this week) and he won't be able to go to hockey practice tomorrow if he isn't totally better. Yes, I know, this is what every kid who gets a cold must go through...but considering the year and half Ben just endured I think he feels these hardships a little more deeply than the average child. That being said, he still endures them more bravely than I could ever do!

He cried a little tonight about the fact that he may need to miss school again tomorrow...but even more troubling to him is that there is a good chance that he might have to miss his first big hockey game against his best friend on Saturday! I really hope and pray he gets better soon...for so many different reasons!

Monday, September 22, 2008

First Hockey Game

Ben had his first hockey game on Saturday afternoon- his team won 7-2!!!!

Ben was so happy to be out on the ice and he had so much fun. He was exhausted by the end and didn't have any energy for the rest of the evening...but I also don't think he could wipe the big smile off his face. Life is good!

Unfortunately, he woke up Sunday morning with a stuffy nose and he has been worried he is going to end up back in the hospital (he keeps asking me to take his temperature) but it hasn't gotten any worse and he doesn't have a fever so we are hoping for the best.

Thursday, September 18, 2008

Blood Donations Needed!

Ben doesn't need any blood at the moment, but lots of other people do! Please donate blood when you can. There are links to the right.

If you are in Los Angeles, and you want to sponsor a blood drive at your organization, please contact Veronika Bauer at Cedars-Sinai Medical Center, 310-423-3530, bauerv@cshs.org. Cedars will provide staff, promotional materials, equipment and supplies, juice and cookies, even a "thank-you" gift for donors, all at no cost to your organization.

Tuesday, September 16, 2008

Steroids

Ben took his last dose of steroids for the month this morning. We all survived another month!

He is feeling and looking great!

Thursday, September 11, 2008

Another Spinal

Ben had another spinal tap this morning and all went well. His main complaint was that he was SOOO hungry so he was extremely eager to eat right after. As usual, we brought the snacks he picked out and are now waiting for some Chinese food to be delivered since I told him he could have absolutely anything that he wanted.

Ben was nervous prior to the procedure. He doesn't like the procedure and he really doesn't like how the medications make him feel. After speaking with the doctors they decided not to use any Ketamine which regularly causes people to hallucinate and instead just used Versed (aka Midazolam). It worked really well in terms of not causing the crazy dreams but it took him a very long time to come out of it. Thankfully, they now have a tv in the procedure room so Ben was able to watch cartoons while eating his snacks and gradually feeling strong enough to walk.

When we arrived home a short while ago we recieved the wonderful message that his bloodwork came back and all is good! White Blood count 3.4, Poly 2305, Hemaglobin 14.3 and Platelets 218,000.

Ben was upset he had to miss school today but is excited to go back tomorrow. His hockey team is also starting tomorrow but upon the advice of the doctors, and to my relief, he has decided to take this first weekend off from sports just to keep his back safe. He couldn't do any permanent damage but getting hit in the back or falling on the ice would be pretty painful to his tender back.

Saturday, September 6, 2008

Some photos





Ben and I just got back from his hockey tryouts -- he'll be starting in a league shortly. Here's a photo.





I'm also attaching a recent photo of Dakota, who is getting really big (she's about 60 lbs so far and is supposed to get to 85 when full grown).





And for good measure, the cupcakes Nicole made for our Labor Day picnic. Those hot dogs and hamburgers are not plastic, folks -- they are made from cookies, caramel, sliced gum drops and other edible stuff! Yes, Nicole made them all by herself!

Friday, September 5, 2008

School

We ended our summer with trips to the beach, museums and play dates. We intentionally didn't go too crazy because we didn't want to wear the boys out right before the start of school, but we still ended up being exhausted at the end of each day with smiles on our faces.

The boys started school on Wednesday and they are having so much fun! When I picked up the boys after their first day Ben was just beaming and said that the Second Grade is fantastic! He loves his new teachers and his classmates are great. David is staying with his same teacher (our school has a combined Kindergarten and 1st grade) which we are all thrilled about because we love her and he is excited to be one of the "big kids" in the class.

I am so happy to be able to get involved in the school once again. I am a Room Parent for Ben's classroom and have signed up for all the committees I was on prior to Ben's diagnosis. While at the school this morning I was able to pop into David's class which he was happy about. I also got to see Ben as he passed me in the hall on his way to Spanish class. I don't get the bombardment of hugs and kisses in front of his friends anymore now that he is older but I do get the wave and big smile which is wonderful!

Friday, August 29, 2008

Two More Years!

No, we're not asking for people to support our Congressional incumbents -- Ben's chemo has only two more years to go as of today! Needless to say, we're very happy and having a little celebration tonight. Thanks again to everyone for your support.

Thursday, August 21, 2008

Countdown . . .

At breakfast this morning, Ben told me that he can't wait until he's 10. When I asked why, he said that he won't have to take his medicine any more -- as of August 29, 2010. He knows the date . . .

Even though we are through the hardest part, there is no question that this continues to be a difficult thing for Ben to deal with. Thanks to everyone for your continued support and encouragement!

Sunday, August 17, 2008

Some photos



Here are Ben and David with Dustin Brown, one of the LA Kings.

Friday, August 15, 2008

Good Numbers Again

We went to the hospital after hockey camp yesterday for a blood check and Vincristine. Ben was a trooper as usual and the blood test results came back great. His hemoglobin is 13, platelets are at 234,000 and ANC is 4100. The numbers are so good that they increased his dosage of Mercaptapurine (the medicine he takes every night) by 25%.

The boys had the last full day of hockey camp today. Ben was worried his energy might be too low to do all of the activities but he stuck it out and didn't miss anything. I let the counselors and coaches know his concerns in the morning and they took extra special care of him out there on the ice. He had a fantastic time. Thank you to all the people from the Kings and Toyota Center for making him feel so special and making the experience so great for both boys!

Tomorrow morning they each have a big game to finish of the camp week. It should be a lot of fun.

Wednesday, August 13, 2008

Hockey Hockey Hockey!!

The boys have been at hockey camp all this week. Ben was a little discouraged at first because things didn't come back immediately...but today was a much better day. They are totally exhausted at the end of the day (although today we went to a friend's house to swim for 2 hours so I guess they still have a little bit of energy left!)

We arrive at the rink in the morning at 8:15 and gear up, which takes awhile with two boys! Then they get on the ice for sessions of power skating, hockey instruction and then have off-ice time for conditioning with one of the Kings trainers. They are done for the day by 2:00. They have skated with many Kings players and are getting instruction from real coaches. It is pretty cool!

The boys have hockey camp again tomorrow and then we are going to head straight to the hospital for Vincristine and a blood check. We will post a number update after we get the results back.

Friday, August 8, 2008

Still having fun!

The boys had another great week of Cali Camp and play dates. It was Harry Potter week at camp and as the boys are crazy about the books and movies it was very exciting for them. We decided today would be a great beach day so we invited a bunch of friends to meet us at the beach and had a fabulous time playing in the sand and waves!

We have a fun weekend planned with get togethers with friends and then next week is hockey camp week.

Ben will get chemo and start steroids for the month on Thursday so we will all gear up for that as it is everyone's least favorite time of the month - especially Ben's!

Sunday, August 3, 2008

Birthday Weekend

Ben is 8!!!!!

We had a great weekend with lots of family time and playing with toys yesterday and today he had his party. We went to a family fun center (laser tag, go karts, miniature golf, video games, etc.) and the boys had so much fun...all three of them :)

Ben was happy to see some classmates he hadn't seen much this summer as well as other great friends and of course some of his cousins. He had a great time doing everything possible at the place. The theme was Indiana Jones and Ben's Grammy made an amazing cake which made Ben's jaw drop down to the floor as he said "COOL!"

The day was great and Ben went to sleep with a big smile on his face...and now I can do the same!

Thursday, July 31, 2008

Horses

The boys love the horseback riding camp they are attending this week. Ben is especially having a great time because he is just crazy about animals! They are very tired at the end of each day but are both bursting to tell me all of the details of their day. It is very fun!

Having them away at camp this week gives me the time I need to get ready for Ben's birthday which is this Saturday. He is so excited to turn 8!

Wednesday, July 23, 2008

Summer Fun!

Ben finished his steroids for the month so we can all relax a little. Just as an update to last week - his numbers were great. Total white count 3.4, hemoglobin 12.9, platelets 231,000 and the all important poly 2037! All good so we are happy.

The boys started Cali Camp on Monday and are totally loving it. They are not going everyday this week as I wanted to make sure we didn't overdo it. They are pretty tired so I am glad that was how we planned it. Next week they will be doing the Wrangler Camp - which means they get to learn to ride and take care of horses every morning. They are so excited about that!

I cannot believe that half of the summer is already over but it has been so much fun and there are many more fun things to come. Ben has been just thrilled to be able to do all the things he missed out on last year. What a difference a year makes!

Friday, July 18, 2008

Update

Ben got a dose of Vincristine at the Cancer Center yesterday, and he started his steroids for this month. 4 more days of steroids to go!

Sunday, July 13, 2008

Back from Vacation






We had a great week in Palm Desert, which is really a lovely place to visit in July. LOL

Although we had no plans to try to get Ben and David interested in golf, I took them with me when I went to play a round. They had a lesson, then the instructor brought them out to me and they finished my round with me (hitting and putting as time permitted). They really got into it, so we signed them up for the rest of a golf camp that was going on. Got them clubs too. Here are some photos of Ben and David golfing, plus some local fauna. We did not get a roadrunner photo, but we saw LOTS of them. :)

Sunday, July 6, 2008

Still Quiet

All is good here. Ben has been feeling great and has lots of energy. We had a pretty quiet week of play dates and various lessons. We also took out the slip-n-slide that Ben received last year as a present (he couldn't use it last summer because of the PICC line) and the boys have been having a blast. It has been hysterical to watch.

We had a fun 4th of July up on the roof again this year. The boys had a great time eating lots of junk food and watching the fireworks. The only upset one was Dakota who wanted desperately to come up on the roof with us. She actually started to climb the ladder and managed to get her back legs up to the 3rd rung before I got her down.

Hopefully all will remain quiet as Ben doesn't have another hospital appointment until a week from Thursday.

Friday, June 27, 2008

Nothing New

All of a sudden I realized that I hadn't made a post in awhile so thought I should give an update. The good news is that I didn't post because there really hasn't been anything going on. Ben completed another course of steroids on Monday so we are happy we survived another month. He was moody and emotional, but I must say it didn't seem quite as bad as the past few months. The boys were able to attend science camp at the science museum all this week with two of their best friends. They had a fantastic time and the teacher commented to me today that Ben and David were so much fun to have in her class and that they are really terrific brothers. I couldn't agree more! Last night they were arguing with each other about which one loved the other more ("I love you more!" "No, I love you more!") - very cute.

Next week should be pretty quiet as we don't have any camp scheduled but we are signed up for hockey, tennis and swimming lessons so should be a relaxing and fun week!

Thursday, June 19, 2008

Good Numbers

The boys were able to go to gymnastics camp today. Ben's back was a little sore so he couldn't do some of the stretches in the morning but he kept feeling better and better as the day wore on.

We went to the hospital for a blood draw and Vincristine this afternoon. Although his veins were being difficult again at least they were able to get the chemo in and draw enough blood to run his numbers. The great news is that his numbers are terrific!! His ANC (the one we look at to see if he is neutropenic) was over 3000. As usual, Ben was a good sport during the poking and kept joking with the doctor and nurse.

We don't have any hospital visits scheduled for a month!

Wednesday, June 18, 2008

Spinal

Well, we arrived at the hospital at 8:00 a.m. and went to the new PICC center which was very nice. After all of the initial vital checks and being hooked up to all of the monitors the staff attempted to insert Ben's IV. Unfortunately, because he has little veins and has been fasting since the previous evening they had a very difficult time getting an IV in. After a couple of attempts the doctor finally got the needle inserted. David and I went out to the waiting room but shortly thereafter one of the doctor's came out to let me know that there was a problem with the first IV and they needed to attempt to get a new one in before the spinal tap could proceed. He let me know that I shouldn't worry but the procedure would likely take a little longer than usual. Well it took much longer. Poor Ben had another IV put in but that one didn't hold either. The good news is that they were able to complete the spinal tap. The bad news is that we need to go back tomorrow for a blood draw and Vincristine as they were unable to take care of either one. Ben took an extremely long time to wake up today but is feeling pretty good now. He is sore and tired but otherwise in reasonably good spirits. I must also note that for being at the hospital for about 6 hours needing to be quiet and calm David was amazingly well behaved. You wouldn't have known he was there if you didn't see him. We have two fantastic boys!

Tuesday, June 17, 2008

Busy Busy Busy!

We had a fantastic week! Having four boys running around the house like maniacs was a blast. The boys had fun having water balloon fights, playing with Legos, going to the aquarium, constantly eating and just generally acting crazy!

We set off for an adventurous weekend of camping on Friday which turned out really great. We went with our good friends who live around the corner and everyone had so much fun. The boys and the dog had a great time - none of them seemed to mind being sweaty and dirty for three days :)

When we returned from camping our guests also returned for another day of fun and we were very sad last night when they had to get on an airplane to return home.

We were a little worried about a cough and runny nose that Ben started over the weekend. The doctors decided to put him on antibiotics yesterday in an effort to keep this week's spinal tap on schedule and so far it looks good. We did have a surprise today when we found out that the spinal needs to be changed from Thursday to tomorrow. Ben is not looking forward to it but he is being a good sport and I am sure he will be happy to have another one over with.

We will keep you advised on how everything goes.

Tuesday, June 10, 2008

School's Out!





Well, Ben and David graduated from 1st grade and Kindergarten, respectively, and summer is upon us. We took a quick trip to Scottsdale with some friends last weekend, staying at a resort with cool waterslides and stuff and taking time to see their Grandmom. This week, Ben and David's cousins from Michigan, Kyle and Reid, are here visiting us. Then next weekend we're going camping with some friends north of Santa Barbara.


Here are some pictures -- Ben with his teachers, Ms. Lomonaco and Ms. Ostrowski; David at his end-of-school celebration; Ben and David at the Patton museum (in the desert between LA and Phoenix -- we drove); and Ben and David with their cousins. Our camera is now broken, so there may not be many new pictures for a while . . .

Monday, June 2, 2008

Good Week

Last week was a nice but busy week. The boys did not have school Thursday or Friday due to Parent/Teacher conferences. We were thrilled with both of their reports. Ben and David have very different personalities but they are both very smart, fun and loved by their teachers!

It is hard to believe but it is the last week of school. Ben is finishing up first grade and David with Kindergarten. This should be a fun-filled week for them at school and of course we have lots of play dates and other things planned for after school. We are eagerly awaiting a visit from their cousins from Michigan next week - this is going to be a very fun and noisy house filled with 4 boys!

Ben is feeling good. He had a cough on Saturday that we were a little worried about but no fever and he otherwise feels great so so far so good.

Saturday, May 24, 2008

Moody

We went to the hospital on Thursday and Ben had his injection of Vincristine and a blood draw. His regular nurse is on vacation (hope you are having fun in Hawaii!) so I did not get a call with the results. I am sure all is fine otherwise I know I would have received a call. I will check in next week to find out the actual numbers. As always, he was a trooper and everyone commented on how great he looks and how terrific he is to deal with.

Ben is on his third day of steroids for the month. The last dose is Monday evening so we are half way there. As usual, he is moody and a little difficult to deal with but he is actually upstairs playing and laughing with David and Dakota so it isn't too bad.

Wednesday, May 21, 2008

Go Kings Go!


Today was an awesome day!!! We purchased a package at a charity event (Tip-A-King) a few months ago which included a hockey clinic for the entire school plus a visit from the mascot for the LA Kings. The boys had fun during the clinic and loved the visit to their classrooms from Bailey. Bailey provided pizza, handed out goody bags and gave everyone an autographed picture. Today was a day filled with lots of laughter and smiles!


Sunday, May 18, 2008

Busy Week


We have had a terrific and fun filled week of swimming lessons, tennis lessons, and play dates every day. The boys had an event at the school called Poetry in the Park. Each child writes three poems and recites them outside in the grassy area of the school in front of their class and friends and family. The boys did so well. Ben was a bit nervous before his but did a great job on Thursday. Friday morning as we were getting ready for school Ben asked David whether he was nervous about standing up in front of everyone to recite his poems and David responded, "why would I be nervous?!" Many parents commented to me that they were very impressed with his confidence.
David's 6th birthday was also this week so we had a big party yesterday!

Ben is full of energy and having so much fun. The boys seemed like they were getting a bit overtired so I decided to keep the schedule quiet today but Ben had a craving for popcorn so we went out to a movie. After the movie we came home and played with water guns in this really hot weather. Dakota is a bit afraid of water, the hose in particular, but the rest of us had fun getting wet.

(I thought since we haven't posted a picture of Dakota recently some of you might like to see how big she is getting.)

Saturday, May 17, 2008

Thank You

Every year Ben and David's school collects items for a charity during the Week of the Young Child. This year the teacher who heads up the program chose the Cedars Sinai Pediatric Oncology department as the charity. I cannot express how wonderful this made Ben feel. The school collected board games, coloring books, journals, crayons, markers and other items kids stuck at the hospital use to help pass the time. The items are lined up in the hallways of the school during the 2 week drive and Ben would come home and report to me the great items he saw in the halls. The drive actually ended last week on the one year anniversary and I was able to drive it over and deliver everything to the hospital the following day. The hospital was so happy to receive everything and I must say it felt pretty wonderful to make the delivery. Ben was very proud to help other sick kids.

Thank you Turning Point!!!

Thursday, May 8, 2008

Anniversary

Well, I have been struggling about what I want to say in the post today...I must admit it has been an emotional day for me. One year ago today, Ben was diagnosed with cancer. It still seems so hard to believe that is true...on the one hand it seems like our lives were just normal a short time ago but on the other hand I cannot believe it has only been a year. I think this has been the longest year of our lives.

Ben had brought the subject up about a week or so ago about how long he has been in treatment. This morning I reminded him that today was the one year anniversary and he just smiled and commented that "boy, I am a very brave boy!" He is proud that he has had the strength and bravery to endure everything of the past year and is happy he is closer to the end of all of this (August, 2010).

He had a fantastic day at school. His class went on a field trip - a nature hike (I went with David and his class yesterday), which was right up his alley. After school we played with Dakota and the cats (mostly Shaggy) and then went out to a favorite restaurant. We came home and made celebratory ice cream sundaes (we have a big drawer full of sprinkles and fun cake decorating candy so the boys made some crazy creations!).

Although I think we have been struggling a bit emotionally lately I think today was a positive milestone. Ben is happy and proud!

Friday, May 2, 2008

All Good

Well, we all survived another month of steroids! This month was particularly hard on Ben but he is now back to normal. As I have said before, it is like he changes into another person. I am so happy to have my sweet boy back!

Today was the Hoop-A-Thon at school. The boys had a lot of fun shooting as many baskets as they could during their turns to raise money for their school. I was all smiles watching how happy the boys were. Things just seem to be back to normal which is a great feeling.

Ben looks and feels fantastic so all is good!

Friday, April 25, 2008

Another Hospital Visit Done

Ben felt great yesterday so he went to school. We went to the hospital in the afternoon for his monthly visit. He had a blood draw and received an injection of Vincristine. Ben did fantastic as usual. No complaints and he had fun showing everyone pictures of his cats and puppy.

Ben's platelets and hemoglobin were good. His white blood count was a bit low but not in the danger levels and likely due to the cough that he has been trying to fight off. I was worried that we might have to go back in to check his levels next week - but they said that unless he gets a fever we don't have to go back in until next month.

He continues to be awesome in the pill swallowing department. He took many pills yesterday including 5 1/2 Dexamethasone, 7 1/2 Methotrexate and 1 1/2 Mercaptapurine...he just swallows them all without any trouble at all.

Unfortunately, his cough acted up last night and this morning so we decided he should stay home today just to be on the safe side. Thank goodness he doesn't have a fever so now we are just trying to have a calm day so he can get back to feeling 100% again.

On another subject, the boys got to see their Aunt Stefanie and meet their new uncle and two cousins on Wednesday night! They had a lot of fun together and are looking forward to seeing them again soon!

Wednesday, April 23, 2008

Bump in the road

Ben has a bad cough and slight fever, so he's staying home from school today. If the fever goes up too high, he'll have to be hospitalized again. So please keep those prayers and good thoughts coming! :(

Saturday, April 19, 2008

Big News

The big news of the week is that Ben is now able to swallow pills!!!!

As some of you may know, we have struggled with the number of pills that Ben needs to take. Partly just because it is a pain due to the food restrictions that drive him a bit crazy but also because in the past he just couldn't swallow them. All pills needed to be crushed and put in pudding or juice (we have tried putting them in other things with little success). Earlier in the week he decided it was time to try again. He didn't get it down on the first try but he persisted and he got it down. Each night he has decided to try a little more and he now gets them down on the first try! The methotrexate pills are pretty easy for him because they are small. The mercaptapurine are a bit larger but he can get them down easily if we cut them in half.

He is so excited about this development! (Scott gave Ben some money as a reward for his big achievement but Ben asked him to give half to David. He is such a good big brother!)

Monday, April 14, 2008

Quiet

Well the boys went back to school last week. Although they were happy to see friends and teachers they were a little grumpy getting back into the swing of things. The week ended on a high note with a visit from their cousins. They had fun playing chase and just generally goofing around. They kept wanting to go jump "on those lazy teenagers" Friday morning before heading off to school - I did finally let them go in to say goodbye. David just couldn't believe anyone could sleep so late (this coming from the boy who would sleep in every day if he didn't have to get up for school! I can just imagine what he will be like as a teenager.)

Ben is feeling good but will sometimes still wake up with a cough in the morning. It is the cough that just won't go away. Thankfully no temperatures and he is feeling great otherwise so I guess we will just need to be patient.

I thought I would let everyone know about a comment that he made to me last week. We were in a waiting room reading and he came over and unbeknownst to me was reading over my shoulder. I was reading a magazine and it mentioned that some person died of pancreatic cancer. He said, "Oh my gosh Mom, he died of cancer?! Did he die a long time ago when they didn't have all the good medicine that they have today?" Although we have commented many times that one of the positive things about Ben getting this horrible disease when he is so young is that he doesn't always understand everything. Sometimes not understanding is a bad thing and sometimes it is a good thing. He has made comments in the past that "he just feels lucky to be alive" so we figured he had picked up on some of the magnitude of all this but as it turns out he really didn't know that people die from cancer.

We are all still trying to deal with our emotions and helping Ben deal with some of his anger and sadness and just a general feeling that things just aren't fair. All in all I think it is all going well and I continue to be amazed and impressed with Ben's strength and character.

(Okay, so I also need to give a puppy update. Dakota is doing well and the boys are having so much fun with her! When we brought her home 3 weeks ago she was 8 lbs - she had shots again today and is over 15 lbs. She's a growing girl!)

Sunday, April 6, 2008

Good weekend




Ben's Grandmom (my mom) is here visiting this weekend, and everything is going well. Yesterday we had the ice at Staples Center after the game, so the boys got to go skating there with some good friends of ours. Here are some photos from the weekend:

Friday, April 4, 2008

Normal Again

The boys are just finishing up their two weeks of Spring Break. It has been pretty low-key around here. We have mostly just been hanging out and bonding with the puppy. Ben still has his nagging cough but it continues to get a little better everyday.

We are all very happy that Ben finished his steroids at the beginning of the week and that all the side effects have worn off. This month seemed a little worse than usual for him emotionally but he is back to his old self again.

We have a great weekend planned with Grandmom! We are very excited to see her!

Wednesday, April 2, 2008

Go Natalie!

On Sunday, Natalie McClurg is running a marathon in Paris for team-in-training. She's running in Ben's honor. Details here. Thanks Natalie!

Friday, March 28, 2008

Spinal Tap

Ben had another spinal tap yesterday and all went well. He was very nervous about the insertion of the needle but with the help of the magical numbing patch, his wonderful and amazing nurse who always takes such great care of him (after she found out he was so nervous she brought multiple types of needles so that he could choose the least scary one) and the skill of his doctor it was not so bad! He came through with flying colors as usual and was happy to have David there as well. This was David's first visit to the PICC center. He was not that impressed. Just spent most of the time in the corner on a chair playing his PSP ignoring everyone else in the room.

Shortly after we returned home we received a call about Ben's blood work and it is all good news. Polys, platelets and hemoglobin are all fantastic.

Tuesday, March 25, 2008

Dakota






[This was drafted yesterday -- uploaded today due to technical difficulties. Scott]

Dakota has been so fun to have around. The boys are having a great time with her. They were a little upset at first because she was very sleepy and timid and seemed a little afraid of them . . . but boy has she come out of her shell. She has very funny bursts of energy when she will run around the yard, pounce on leaves and chase her tail. She is incredibly cute! She still wakes up a bit during the middle of the night, but is getting a little better. I was a little annoyed with her last night when she kept whining to come out of her crate - I brought her out to the potty spot in the yard and all she wanted to do was roll around and play!

The good news is that she seems to be getting the hang of the housetraining issue. She whined at the door this afternoon and when I opened the screen she immediately ran out to her spot and peed. Way to go Dakota! I'm sure she will have many accidents, after all she is just a baby, but she is pretty smart and we think she will get it down in no time. The boys had fun this morning trying to get her to sit on command. We are looking forward to doing all kinds of fun things with her!

Ben continues to have a little bit of a cough but it is getting better everyday and he otherwise feels fantastic. We just need the cough to continue to clear up so all can proceed on schedule on Thursday morning.

Saturday, March 22, 2008

Puppy Day!!!!





[This was drafted last Saturday -- it's being posted today due to technical difficulties! Scott]

Well, today was the big day! We drove out to pick up Dakota today! We were a little worried about how she should would react to the long car ride home (about 1 1/2 hours). We thought we would need lots of potty breaks and that she might be upset . . . but she was fine the whole way and in fact slept for much of the trip.

Dakota is absolutely beautiful and totally sweet. She has been very sleepy today and pretty shy with all the changes in her life. But even with that she has been great with the boys and very relaxed meeting all the cats of the household. Shaggy seems to think he now has a new playmate and Dakota doesn't seem bothered at all by the prospect. Zorro keeps checking him out and is curious but not upset. Geronimo finally noticed her late in the afternoon - seemed a little annoyed but otherwise didn't pay much attention to her.

Both boys have spent much of the afternoon with her sleeping or relaxing on their lap. Although there have been times when they have forgotten to restrain their excitement, I must say that they have been really good with her. Dakota loves her crate and at first she was too nervous to eat or drink anything but by about mid-afternoon she got her appetite back. She was even successful in making a potty in the correct potty spot outside (only one accident but considering her day and that it wasn't on me on the car ride home I think that is pretty good!)

Both boys have been amazing but Ben really has shown his maturity and love for animals with his treatment of her. This has been a terrific day!

Oh yeah, and on the issue of Ben's health, he still has the nagging cough that sounds terrible in the morning. But that being said he still hasn't had even a hint of a fever and feels fantastic so all good so far.

Thursday, March 20, 2008

Spring Break

Ben still has a cough but no fever and is otherwise feeling fantastic. He was able to attend school the past two days. Ben was very happy not to miss more school because his class had earned enough stars to earn a pajama party on Wednesday and then they had a special lunch and celebration today to celebrate the last day of school before Spring Break. They will be home relaxing and having fun for the next two weeks.

The boys are very excited to be on Spring Break which means no rushing off in the morning, no homework and most importantly bringing home the new puppy!!! We are all so excited and are counting down the minutes until Saturday morning. The timing will hopefully be perfect. This will give the boys lots of bonding time with the puppy. We have had so much fun shopping and setting up the house for Dakota!

Ben just has his normal daily medications but he will be receiving another spinal tap a week from today. I was discussing the fact that I need to get help with David during that morning to someone else and he overheard me and he said, "will you please not discuss the spinal in front of me, I don't like them and I really don't want to be reminded that I need another one so soon." He knows it is coming and is not nervous, but doesn't want to talk about it. I am always just amazed that he is able to express himself so well...and he is only 7!

Tuesday, March 18, 2008

Uh oh

Ben has a bad cough, so he's going to stay home from school today. Let's all hope it doesn't get worse . . .

Saturday, March 15, 2008

New Comment Setting

We've been getting some spam comments including two links to virus sites, so I've turned on that annoying "word verification" thing to control the problem. Sorry, folks!

Puppy time!





Many of you know that we've been waiting a really long time to come off the waiting list for a new puppy from a breeder we put a deposit down with. Well, we came off the list, we picked out our puppy, and we get to pick her up a week from today!

Today we went to the pet store and bought a crate, food, collar, leash, toys, "beware of dog" signs (LOL), etc.

The puppy's name will be Dakota. She's a Native American Indian Dog, which is a somewhat controversial breed (not recognized by AKC but recognized by some less pedigreed organizations (/rimshot)). The breed supposedly is good for people with allergies.

Now, the photos. At the top, we have Dakota on top of one of her sisters (taken by us a couple of weeks ago). Next is Ben in front of Kya, Dakota's mother. And the bottom shows Jake, the father; Kya, the mother; and the whole litter of five (photos taken several weeks ago). Dakota is the one in the middle of the bottom row of photos. In the picture of the three girls, she's on the bottom right.

All else is going well. Ben had some green stuff he coughed up today, but we're thinking he just ate a leprechaun or something. ;)

Tuesday, March 11, 2008

Skating with Bailey

On Sunday, the boys got to skate with Bailey, the LA Kings mascot. It was great to see Ben having so much fun and so much energy. Before he was diagnosed, he was getting really tired at hockey practice and we didn't know why. It's great to see him healthy again! He says he can't wait to start playing hockey again.

Tuesday, March 4, 2008

Make-a-Wish Update

Ben finally picked his wish. They wanted a back-up, so he submitted two.

The first wish is to go on a camping trip with Survivorman. They told us that it is unlikely they'll be able to pull this off. Usually celebrity requests like this can only be fulfilled with a meet-and-greet. We told them he'd prefer the back-up wish if he can't actually go out and learn how to survive with Survivorman!

The back-up wish is an exotic fishing trip.

We'll see what they can do for him!

Monday, March 3, 2008

Last day of steroids for the month

Ben is finally feeling pretty good. It was a tough weekend emotionally as the steroids really took their toll on Ben this month. We are so happy that he gets the last dose of the month tonight. Of course, it didn't help that we found out that we may not be able to get the puppy we have been wanting to get and also the fact that one of our fish died - but everything just seems to be multiplied when he is on steroids. He has all kinds of emotions that he doesn't understand - and unfortunately it is usually sadness and anger that predominate during these few days. Thank goodness it is only for 5 days a month!!

He was able to go to school. I was worried that it would be too overwhelming for him but he always seems to do well there. I spoke with his teachers before school started to let them know what was going on and that I could be at the school in 5 minutes if he needed me. His teacher was the one who put the boys in the car at the end of the day and she said he had a great day!

Today is Family Night which means the boys do not have any homework. We had fun playing baseball in the back yard (and the boys beat me badly) and doing some fun science experiments. I am letting them play 20 minutes of Playstation and then they are going to help me make dinner. What a nice day!

Thursday, February 28, 2008

Another month over

Ben finished his second month of Maintenance. We went to the hospital after school today and he had blood drawn for his bloodwork - and he didn't even flinch and didn't need to sit on my lap. He then had another dose of Vincristine. He was nervous about it but did great!

We also found out that his numbers are wonderful. Hemoglobin, platelets and white blood count are all good! I forget the exact number of his ANC but it is around 2600...much better than the zero he had a couple of weeks ago!! He started steroids today and will take them for the next 5 days and will take the Methotrexate that he takes on Thursdays.

He gets the next month off from the hospital. We do not need to go in until the end of March when he needs to get another spinal tap.

He is feeling and looking great!!

Tuesday, February 26, 2008

Short Update

It's all good. :)

Thursday, February 21, 2008

School

Ben had such an amazing time at school today. I asked him how it was to be back and he said, "I loved it!" He has been all smiles - even while doing his homework :)

He said that he was very careful about keeping his hands clean and used his hand sanitizer regularly throughout the day.

He was just so thrilled to see all his friends and teachers. Hopefully we will continue to have more days like today!

Back to School!

Ben went back to school today. It's a bit of a risk with flu season in full swing, but hopefully he won't catch anything . . .

Monday, February 18, 2008

Going up!

Ben had a blood check today and a visit with the doctor - the good news is that his ANC is 506. Technically no longer neutropenic (because it is above 500) but still pretty low. He can now start back up on the normal schedule of Mercaptapurine everyday and Methotrexate every Thursday. He is due for Vincristine on February 28th and that is still set to go forward. Ben wasn't really paying attention to most of the discussion (we have really been cutting back on video games but allow both boys to play their PSPs when we are at the hospital so they don't really even notice that anyone else is in the room) but he did like the news that he gets to stop the antibiotics.

We discussed when he could go back to school. We joked that it would be really great it if I could just keep him home until flu season is over but since he is so eager to get back they said I could send him on Thursday. We were so excited! I thought they might make us wait until next week or so. Of course, we should still be really careful and have the normal precautions in place and we will be avoiding public places for a couple of more days. I am really hoping the kids at school will be healthy. As we have learned, when someone else gets a cold they might need to stay home from school for a day or two but when Ben gets one he ends up in the hospital for a week and missing school for 2 or more weeks.

By the way, I need to make a comment that Ben is so awesome and brave. He had yet another blood draw today and they couldn't do a finger stick so had to draw from his arm. He said, "it really isn't a big deal" and then informed the person doing the draw that after being poked 5 times one morning last week by 3 different nurses when they were trying to find a vein to re-insert his IV that getting a blood draw is really pretty easy. The woman just looked at me and said she couldn't believe how amazing he is. He gives the nurses less trouble than the adult patients!

Friday, February 15, 2008

Good News

Ben had a blood check this morning and the good news is that his numbers are FINALLY starting to go up. He is still neutropenic and on antibiotics and we will continue to be extremely careful...but it is so nice that the counts are going in the right direction. We will continue with our plans for a quiet weekend at home but Ben gets a break from the hospital until Monday. Maybe we will get really lucky and there will be a huge jump and he will actually be able to go back to school sometime next week. You never know :)

Thursday, February 14, 2008

Thursday Update

We are so happy to be home!!

Ben woke up feeling great and in a wonderful mood. Ben and David had fun playing together - they missed each other so much.
We had a little bit of a scare when Ben's temperature started to inch upward but thankfully it went right back down to 98.7 so no trips to the hospital today. I have done my best to clean everything. As usual, there has been lots of Lysol and Purell used today. I keep saying that I am just going to treat him like the boy in the bubble until his numbers start to go up. I think I am starting to drive him a bit crazy constantly taking his temperature, but I promised the doctor I would be extra diligent.

We are going back into the hospital tomorrow morning, but just for a blood check. The expectation is that his ANC will still be about the same (yesterday was around 30) but you never know. David is off of school today, tomorrow and Monday so we will just be doing a lot of playing around the house.

Wednesday, February 13, 2008

Finally!!!!!

Ben is being discharged TONIGHT!!!! Needless to say, we are incredibly happy.

Thanks to everyone for all of the support. At last count, we had 66 entries on the Buddy Map. If you haven't already signed it, please scroll to the bottom and let Ben know you're pulling for him!

WOO HOO!!!!!!!

Tuesday, February 12, 2008

We seem to have overwhelmed the Buddy Map server!

LMAO -- Keep trying!

How about that Buddy Map?

Wow, less than a day and there are already 40 people who have signed the map! I told Ben and he said, "awwwwww, that's so nice of everybody!" So if you haven't already signed up, go to the bottom of the page and do it please! And tell your friends!

Ben's IV was removed last night, then several different nurses tried unsuccessfully to insert a new one. Ultimately, they decided to switch him to oral antibiotics since he's now drinking enough and doesn't need IV fluids. Hopefully they'll work as well. This was great, as Ben finally was able to take the shower he desperately needed! LOL

Ben's numbers are climbing, albeit slowly. He'll probably be in the hospital for at least a few more days. Thanks to everyone for the nice emails and comments on the blog. The support really means a lot to Ben and to us.

Monday, February 11, 2008

New Blog Feature

Our friends in New Zealand, the Whites, have a great blog about their daughter Bianca's fight against ALL here. Their blog has more bells and whistles than ours, but since I just stole one of them, we're gaining on them! LOL

Check out the "Buddy Map" at the bottom of the page, and please add yourself. It will be really neat for Ben to be able to see that he has friends all over the world!

By the way, I am taking a second night with Ben tonight due to my work schedule later in the week. Ben went to sleep very early, right after dinner. Dr. Hurvitz stopped by again and indicated that his ANC (poly) count needs to come up before he can get out of here. That probably will take at least a couple of days.

Thanks to everyone for the prayers and good wishes.

Home tomorrow?

Maybe, they tell us. This time, Ben's doctor says so too. But we are not going to get excited yet.

His temperature is down, but it is going up and down. His counts are going up slowly. So this is all good. We'll post another update later.

Monday am update

Ben's temperature has dropped, but that's happened before so we're not exactly relieved at this point. We're waiting for results from blood and urine tests and a chest x-ray. His regular doctor should be in here soon, and we're looking forward to hearing what she has to say.

Ben was a total stud when they drew his blood.

--- interruption ---

We just got a surprise visit from one of my sister's friends, who brought some balloons for Ben. Really, really nice guy.

--- back to posting ---

The blood draw -- not only did he not cry, but he didn't even wince! We are really proud of Ben. It sure would be nice if we could get out of the hospital and get him back in school. We'll keep everyone posted.

Oh, a lot of the Fun Centers here are broken. So donations to the Starlight-Starbright Foundation (link in right margin) would be appreciated! (Sorry, I can't help myself.) :)

Uh oh

Ben's temperature has shot back up to 101.6. His polys (key white blood cell count) are zero. This is not good and they can't figure out what's going on. It's a good thing we're in the hospital. I'm staying here today and will post an update when we have one.

Sunday, February 10, 2008

Sunday update

We're still here! Nicole spent the night last night; tonight it's my turn. When new nurses or residents start their shifts, they tell us, "so, are you excited to be going home today?" Then they learn that we're not leaving. Good comedy.

I have completely abandoned my diet because I don't care. :)

Saturday, February 9, 2008

Bad News

Blood cultures were negative, but Ben's doctor wants him to stay another 3-4 days because he's neutropenic (doesn't have enough white blood cells to fight off infection like a normal person).

This really sucks.

Home soon?

We are getting blood culture results within the next hour. If they are negative, we supposedly are going to be discharged! So keep your fingers crossed.

Just to keep things in perspective, it's not unusual for us to get good news like this and then have things "change" (i.e., the person who gave us the news was misinformed on the views of the doctors with real authority to discharge or there is a subsequent change in circumstances). So we're not going to get too excited and neither should you!

But this is good. :)

Friday, February 8, 2008

Friday Night Update

Today was a pretty good day. Ben was feeling much better and was much happier - we had fun being very silly much of the day which was nice because he was feeling so yucky yesterday that there wasn't much silliness going on.

Ben's fever has been down ever since we got the room up in Pediatrics so that is good. His white blood count didn't come up at all so it is still up in the air how long he will need to stay in the hospital - we have been receiving conflicting reports. Could go home tomorrow...or a week from tomorrow. It is all about what the numbers look like. I think we will have a much better idea tomorrow morning after they review the blood cultures to see whether anything has grown - so far everything has been negative (which is good). But of course, there is also the issue of the white blood count which is extremely low so even with a negative on the blood culture it is possible they will want him to stay in the hospital to receive IV antibiotics until his immune system is stronger. The good news is that we have a nicely configured room, a FunCenter and of course the wonderful nurses and doctors at Cedars to take very good care of us!

Well I am going to try to get a good night's sleep - snuggling with David and 3 cats!

Friday Morning Update

I am at the hospital with Ben (came in for a quick visit and to drop off homework before going to work). If his blood cultures don't grow tomorrow, we may be able to go home tomorrow night. Tonight it's my turn for the Cedars Sleepover Party!

Thursday, February 7, 2008

Another Update

I'm home with David. Ben got a room in Pediatrics.

Hospital Update

David and I are in the Infusion Center with Ben and Nicole. (For those who may not remember, the Infusion Center is a place at the Cancer Institute where people come to get chemo on an outpatient basis. They have private rooms there where you can stay overnight if necessary, but you can't stay more than 24 hours.) We are still waiting for a bed to become available in the Pediatrics wing of the hospital. We expect to be here at least a few days. :(

I'll take David home later. Nicole will spend the night with Ben in the hospital.

Back in the Hospital :(

Ben is being admitted to the hospital. He's had a fever for the past several days and his ANCs are down to 60 (this means he doesn't have enough white blood cells to fight off infection, so he needs IV antibiotics). So much for maintenance being Easy Street . . .

Nicole is at the hospital with Ben. I'll leave work early today to get David, then we'll go over for a visit. Ben is actually not unhappy to be in the hospital. He was enjoying some hot chocolate when I spoke with him a little while ago, and he loves the food in the pediatrics wing where he'll be moved shortly. Plus he gets to play with one of the Fun Centers provided by the Starlight-Starbright Foundation, so it's not so terrible.

We'll post an update later.

Wednesday, February 6, 2008

Patience

Ben and I have had lots of time to hang out. Not much going on except that the medications, except for the steroids, have been put on hold for the time being while we wait for his numbers to go back up. We are starting to see some of the emotional side-effects of the steroids and of course the disappointment that he is stuck at home once again doesn't help matters. The good thing is that he is feeling pretty good.

Ben was pretty tired and grumpy this morning and I made a little panic call to the hospital because I thought he looked pale, but as it turns out his hemoglobin was normal on Monday and as the day progressed he looked much better. I think he is just fighting the final stages of the virus so we are just playing a lot of board games, coloring, reading and watching tv (there have been some disputes between the boys that caused them to lose all video games so those have been cut off for the time being). Ben's teacher has been sending home some of his schoolwork so we have been doing that as well. We have had a great time researching and figuring out what he wants to make for his Valentine's Day project - he came up with a great idea for his Valentine!

Monday, February 4, 2008

Still Waiting

Well, the good news is that Ben's doctors decided that they could go forward with the Vincristine and steroids today so his Maintenance Phase can stay on track. Even better news is that even though Ben was extremely nervous about getting the Vincristine without a PICC line, because of the special numbing patch they used on his hand (and of course because of the expertise of the doctor and nurse) the needle insertion was completely pain free.

It was actually kind of funny. Ben was getting more and more nervous by the second as the doctor was having a little bit of difficulty finding a vein in the top of his hand. She finally said okay I found one and then a few seconds later Ben said, "when are you going to do it???" and she replied, "It is already in!" That certainly brightened Ben's mood!

The first blood sample that they took was no good so Ben needed to have his finger poked so they could get an accurate read on his numbers. He was very brave. Unfortunately, his white blood count has gone even lower. It is down to around 165. This means that Ben continues to be neutropenic so he will need to continue to stay home from school. According to the protocol, because his number fell below 500, we have stopped the Mercaptapurine and he cannot receive the Methotrexate. Hopefully because he is feeling much better (no more fever) the numbers will start to go back up soon. They also mentioned that the Dexamethasone (steroids) may help the numbers to go up. Not sure what the next step will be. I should find out more tomorrow.

Saturday, February 2, 2008

Not better yet

Well, Ben had his blood checked (which he was very nervous about because he no longer has his PICC line so now they need to take it the old fashioned way) and results were not what we wanted. He is neutropenic again. This is not totally unexpected but obviously not what we had been hoping for. The nasal swabs and the cultures they started on Thursday were negative, so this is probably a virus and it has just caused his ANC to go down. We will continue to give him antibiotics and Mercaptapurine but everything else is still on hold.

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

Normal

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

Maintenance!!!

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 Walmart.com) ~ 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 (proudbody.com) ~ Precious Imprint Tin (webstergroup.us)

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!