Monday, November 29, 2010

Another Great Check-Up

Ben had another great check-up with the doctors. He looks and feels healthy and strong and his numbers are great.
White Blood 6.4, Hemoglobin 14.1, Platelets 189,00 and ANC 3712. Ben is now off the antibiotics and the only remaining medication is for his gallstones everyday which the doctors have indicated they might take him off in 3 months. All in all things are going great!
We had a wonderful Thanksgiving and are now gearing up for the holidays and Winter Break!

Monday, November 1, 2010


Well, it has been two whole months since my last post. Sorry about that!

Things have been going really well. Ben and David started school and love their teachers and classes. Ben has had a few colds which have put us a little on edge because there have been 2 times where we were worried he might be admitted to the hospital because of a fever...but so far so good! Despite some major tummy issues, which are probably more to do with his gallstones than anything else, all has been great. Ben's numbers have been fantastic and they have told us that the antibiotics will be stopping shortly so all that he will need to take is a daily pill for the gallstones.

Both boys have started playing flag football. Ben is on the Sea Hawks and David is on the Jets. They are both really enjoying themselves. The season is almost over so we will probably be signing back up for hockey, although Ben has expressed an interest to try out lacrosse so we will have to see what the schedule is going to allow.

All in all life is truly returning to normal!

Wednesday, September 1, 2010

The End of Chemo!!!!

Well almost 3 1/2 years later we can happily say that Ben no longer needs to take any chemo drugs!! Woo Hoo!!!
The past month has been pretty crazy. Ben was really getting hit hard by the drugs at the end and seemed to stay neutropenic forever but thankfully things started to look up at the middle of August...and just in time too because Ben was cleared for his Make-a-Wish trip less than a week before we were scheduled to leave. What an amazing organization and an amazing trip for Ben. He wanted a cool fishing trip...and boy did they ever deliver! Alaska was truly beautiful and Ben had the time of his life. We returned back home on August 27th with only 2 days left of medications. Ben took the last of his Mercaptapurine on August 29th and we had a little party to celebrate. It was interesting because Ben didn't view it as a big deal on that day - in fact wouldn't even let me take any video or pictures to commemorate the occasion. But then two nights ago he yelled at me from the kitchen making fun of me for not having set out his pills - when I walked in laughing his jaw just kind of dropped when he realized that he didn't have any pills to take!! And then last night he complained that he hadn't had enough dinner and was hungry at around 7:00 and was annoyed because he couldn't eat anything because it was too late and would interfere with his meds - again I gave a little chuckle and he ran into the kitchen to make himself some popcorn. I don't think I have ever seen a kid so happy to have a snack at night in my life! All of these little things that have driven us crazy over the past 3 years have gone away. We are prepared that Ben's immune system needs some time to come back up and he will need to be very careful during the upcoming cold & flu season to try not to get sick because it could still be dangerous for him...but after what he has gone through, I think we can handle it!

Today was the first day of school for the boys. David is entering the 3rd grade and Ben is going into 4th grade. I cannot wait hear how their first day went!

Monday, August 9, 2010

Low Low Low

Well, Ben has been neutropenic for 2 weeks and we found out yesterday that his numbers have dropped even lower :( His ANC is now down to 60. Hemoglobin is also low but at least his platelets are normal!

Ben is very bummed because he has been waiting all year for a special chess camp that is taking place this week. The boys went last year and they had the best time ever. When I asked them if there was only one camp they could do this whole summer what it would be - they both chose this camp without any hesitation (which totally shocked me). Anyway, we are trying to cheer him up by doing other activities, including taking over a good friend's pool this week while they are out of town. David decided he didn't want to go to the camp either without Ben - he said he wanted to hang out with his brother and try to still make it a fun week for him.

We are expecting to hear from his doctors this morning about what the next course of action is going to be. Very likely they will be putting him on antibiotics to help protect him from all the things currently going around. We are just really hoping we can get these numbers up soon so we don't have to postpone his Make-a-Wish trip!!!

Monday, August 2, 2010

Ben is 10!!!

Well a lot has happened since the last post.
Ben had his very last spinal tap in July - all went well except some crazy dreams about chickens attacking him but he handled everything with his fantastic positive attitude and as usual was in inspiration to everyone. We found out his numbers weren't terrific but not officially down into the neutropenic levels so we were given the okay to go on our trip as long as we agreed to go back to the hospital right after we returned for a blood check. We went up to Whistler, British Columbia and Ben was able to fish every single day!
We did visit the hospital upon our return to LA and discovered Ben's numbers had dropped so was neutropenic. We have had to make some adjustments to his activities and plans for his birthday but Ben really wanted to have a smaller celebration this year so we invited two great friends over for a sleepover and they had a blast. The silver lining to being neutropenic is that he isn't allowed to take some of his medications so he hasn't had to have his normal food restrictions in the evenings and he has been taking advantage by having lots of late night popcorn!
We went back for another hospital visit yesterday. Ben is still neutropenic and his liver functions are still elevated but the good news is that his ANC is going up (484) and his liver function is coming back down closer to normal levels so at least everything seems to be headed in the right direction. For his birthday celebration he went fishing with family and friends and had a great dinner grilled up by Scott with lots of presents to unwrap. Today is his actual birthday and he has a couple of friends who want to stop by but otherwise he says he wants to hang out and play with his new toys, watch a movie and eat popcorn! I think we can handle that!
As some of you know he had asked that people not send him gifts this year but instead make a donation to the Cedars-Sinai Pediatric Hematology-Oncology department. Thank you so much to all of you who have done so. It means so much to Ben to try to give back at least a little to this amazing place that has done so much for us!

Friday, July 2, 2010

Sleepaway Camp!

Ben is gone for a week, enjoying his first experience away from home as a camper!  He's at Camp Ronald McDonald, which is for kids with cancer and totally sponsored by Ronald McDonald House.  He's going to make tons of friends and be able to spend time with other kids who are going through the same thing, which is awesome.

As usual, I've got to give you the donation pitch:  you can give here if you want to support this charity (link in right margin too).

Everyone please pray that Nicole survives the week without her baby!

Tuesday, May 25, 2010

All is Good

Well after a few tough weeks it has quieted down and things are good. We went to the hospital last week for a blood check and Vincristine. Thankfully his numbers are still good (ANC 1037, hemoglobin 11.3, platelets 246,000) so the doctors were able to bring his medications up to the 75% level. We will return in 2 weeks for another check to see whether they can go back to full dose levels. We successfully completed another month of steroids and everyone survived so that is good!

Ben has had an amazing year at school even with all the sickness. He received rave reviews from his teacher (who Ben thinks of as a rock star) and we walked out of the conference smiling from ear to ear. This is a short week due to parent/teacher conferences so after David's conference on Thursday I am taking the boys and heading camping. Yes, those of you who know me might be laughing at the thought of me trying to put up a tent...but even if it is lopsided we are going to have so much fun! :)

Wednesday, May 12, 2010

Tough Few Weeks

Ben has gone through a tough few weeks, but the good news is everything is now better! His spinal tap a few weeks ago was especially tough and then he had horrible headaches for a full week after which kept him home from school. Everytime we thought he was getting better he would start to get up and do normal things...and the headache would come back full force. Thankfully he had a little bit of a break and got back to school but we needed to go back in to the hospital last week for a check and to see how his liver function was doing and we received the surprising news that he was neutropenic! We were suprised as he was feeling and looking good - but I guess that little cough really did a number on him. After a full week home from school again, we thankfully went back to the hospital today and found out his ANC was up to 983 which means he gets to go back to school tomorrow! Yippee!

Thursday, April 22, 2010

Tough Day

Ben had a spinal tap today and as he said after we got home, "that was the toughest one yet!" Everything started out fine at the hospital, but because he didn't have enough to drink yesterday the doctors and nurses just could not find a usable vein. Even his normally very reliable vein in his right hand was just not cooperating. After lots of looking they decided to use the ultrasound machine to help out and thankfully they found one, however, not in the nice numb area we were hoping for. Ben took about the average time feeling back to his normal self, however, while going to the car he started to feel yucky. He was very quiet and I knew something was not good and this was confirmed when he got sick in the back seat. The poor guy was feeling awful.
He has spent the rest of the day on the couch or in bed and is still not feeling great but thankfully he is definitely feeling better than he was earlier.
Ben's blood worked showed that his liver function is elevated again so they will need to check how that is doing before his next dose of Vincristine. The good news is that his hemoglobin (12.6), platelets (163,000), white blood count (1.9) and ANC (1315) are all good!

Friday, March 26, 2010

Spring Break!

Ben had his vincristine one day early this month for scheduling reasons and all went well. As usual, he had the whole room laughing :)
His numbers are pretty good. White blood count is 3, hemoglobin 12.3, platelets 197,000 and ANC 2706 (still a little higher than they would like but they anticipate it will go down now that he is on his full dose of all medicines).
The boys had their last day of school today before 2 weeks of fun and relaxation. We have lots of great outings planned and a little bit of baseball camp thrown in for some extra fun!

Thursday, March 11, 2010


We just finished up at the hospital, just for a blood check. Ben's numbers are great. His ANC is 5000. I was a bit confused because it has never been this high but they explained that since he was on no meds and then has gradually been coming back up to full dose this is not unexpected. I guess they like the number to be around 1500 and it will likely go back to that level now that he will be on 100% of the normal levels of medications starting tonight. I was nervous that since he has had a cold for the past 5 days or so that the numbers would be low but I wasted my time and energy worrying!
Ben is thrilled and back at school for some very fun activities so everyone is happy!

Tuesday, February 16, 2010


We went to the hospital for a blood check yesterday and received terrific news...Ben is no longer neutropenic! Yay!!! His ANC is over 2200!! Hemoglobin and platelets are also great so they are putting him back on his medications at the 50% level and we will go back in next week for another check and some Vincristine. Ben is so happy to be able to go back to school!

Sunday, February 14, 2010

Happy Valentine's Day!

We had a nice day of playing Yu gi oh (well not me, but Ben, David and Scott had fun with it), eating sweets and watching the Olympics. Ben has been bummed to have had to miss quite a few things this past week but we have tried to make up for it with fun games, lots of Heely practice and even had a friend spend the night last night which was fun for everyone!

We are scheduled to go back to the hospital tomorrow for a blood check and are hoping and praying for some great numbers! That would be the best Valentine's present ever!

Monday, February 8, 2010

Neutropenic AGAIN!

Well, Ben has a cold but is otherwise feeling pretty good and is in good spirits. Unfortunately, we went to the hospital this morning and found out his ANC has dropped to 178 :(
He is not allowed to go to school this week so he will miss the Valentine's Day party scheduled for Wednesday, but thankfully there are only 3 days of school this week. He is a little bummed because we had all kinds of plans for the 5-day weekend ahead but I think we have to cancel most of them and come up with different things to do. Ugh!

Friday, January 29, 2010

Spinal Tap

Another one down...only two left before the end of treatment in August!!
All went well yesterday. Ben had some distress coming out of the sedation - lots of crying and confusion - but it didn't last long and he doesn't remember any of it. He feels pretty good today but unfortunately he is neutropenic (ANC is 428) so he couldn't go to school. The doctors had actually given the green light for school, but there are lots of sick kids so we made the decision to keep him home since we don't want a repeat of his Fall hospital stay! The blood work also showed some elevated liver functioning so we will go back to the hospital, either next week or the following week, for more blood work to check on what is going on with that.

Wednesday, January 27, 2010


Well, I took a little break from posting. Everything had been a bit overwhelming for me for awhile and I just couldn't get myself to post anything. Sorry about that!

Ben is well. He goes in for a spinal tap tomorrow so I will be sure to post how it all goes. Ben has been tired and dealing with all of the emotional ramifications of this whole process but on the whole he is good. Things are fantastic at school (as someone at his school said, "his test scores for the standardized test were off the charts!") and with friends. He continues to be an amazing and brave boy who surprises me with his strength and kindness on a daily basis!