Ben Fights Leukemia

CureSearch Walk - March 11, 2012

2012-02-01T18:21:00.000-08:00

We're all walking to raise money for CureSearch/Children's Oncology Group, the premier pediatric cancer research organization, on March 11, 2012. If you want to make a contribution or join our team, you can do so here:

http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=1000407&lis=0&kntae1000407=A7C283C42D08448AA6054D9A912AE520&team=4960975

Note that Ben, David, Nicole and I (and other members of our team) all have our own fundraising pages, so make sure you are sponsoring the person you want. Or you can sponor the team as a whole! Thanks so much for anything you can do to help!

Milestone

2011-09-13T14:46:00.000-07:00

Ben has been out of treatment for over a year! Woo Hoo! Ben's numbers were "perfect" at his last visit so now we only have to go back every 2 months which we are pretty happy about.

The boys started school last week and have been loving it. The teachers and classes are great. Of course, getting used to getting up and out of the house early and the homework is taking the usual adjustment period but they are both doing well.

Ben will be playing for the school's flag football team starting next week and he cannot wait.

Life if good :)

Summer Fun

2011-07-27T18:31:00.000-07:00

We have been having a great summer. The boys both went to Ronald McDonald sleep-away camp last month and had a blast. David wasn't sure he wanted to go but since Ben talked about it nonstop for the past year David decided he would give it a try and ended up having a great time! Of course, I was a bit of a mess with both boys leaving but was so happy for them to have this adventure. The rest of the summer we have been trying to be a little more relaxed than usual with less camp time and more family time and play dates. It has worked out well and in our extra time we have been swimming and the boys have been taking tennis and golf lessons.

Ben had an amazing check-up again last week and his numbers continue to be strong. We are only a month away from the one year milestone since the end of chemo and the doctors have said that since he is doing so well that he will only need to go in for blood draws every 2 months!! This has been a long road but things are going so well now. We are so thankful for all of the support from doctors, nurses, family, friends and sometimes even strangers!

Update

2011-05-05T13:20:00.000-07:00

As I was sitting here with Ben, who is home from school with a cold, I realized that it has been a very long time since I have made a post. The good news is that no news is usually good news! We have just been really busy with school, friends and sports. Although Ben has been plagued with catching many viruses over this long cold and flu season he has managed to stay out of the hospital except for short visits (no overnights!) and his numbers have been fantastic.

Ben played lacrosse for the first time starting in January and although his team did not have a great season he had an amazing time with this fun sport. He also started on his first little league team this Spring and he has been having a blast so far this season. Although I think he would be having fun no matter what, it doesn't hurt that his team is awesome.

We went on a fun-filled vacation to Hawaii over Spring Break where we spent our days in the pool and beach. Ben had a great time fishing and also some amazing dolphin interaction time. All in all it has been a wonderful few months!

Ben is Great

2011-01-17T21:33:00.001-08:00

Ben had another checkup today and all is well. Ben's numbers are great - very high and he is feeling strong. We did discuss the issue of his gallstones and his doctor decided that Ben should see a specialist to find out what they recommend. Apparently, in adults the usual course of action is go in and get them out but we are hoping to avoid that but we also don't want him to have to stay on medication forever. We will see what happens.

The boys have started their new sports. Ben with lacrosse and David with basketball. They are both loving their teams and are doing really well!

Another Great Check-Up

2010-11-29T14:11:00.000-08:00

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!

Sorry!

2010-11-01T13:55:00.000-07:00

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!

The End of Chemo!!!!

2010-09-01T11:56:00.000-07:00

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!

Low Low Low

2010-08-09T09:21:00.000-07:00

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!!!

Ben is 10!!!

2010-08-02T11:30:00.001-07:00

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!

Sleepaway Camp!

2010-07-02T07:40:00.000-07:00

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!

All is Good

2010-05-25T13:36:00.000-07:00

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! :)

Tough Few Weeks

2010-05-12T19:38:00.000-07:00

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!

Tough Day

2010-04-22T18:58:00.000-07:00

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!

Spring Break!

2010-03-26T15:50:00.000-07:00

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!

Yay...Again!

2010-03-11T10:03:00.000-08:00

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!

YAY!

2010-02-16T09:09:00.001-08:00

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!

Happy Valentine's Day!

2010-02-14T20:44:00.001-08:00

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!

Neutropenic AGAIN!

2010-02-08T13:53:00.000-08:00

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!

Spinal Tap

2010-01-29T13:01:00.000-08:00

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.

Sorry

2010-01-27T12:07:00.000-08:00

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!

Thanks, Mr. Colley!!!

2009-12-03T12:41:00.000-08:00

Pat Colley, one of Ben's teachers, is running an Olympic-distance triathalon next Spring to raise money for the Leukemia and Lymphoma Society in Ben's honor! Please support Pat by checking out his Team-in-Training page. Link here and in the right margin.

Thanks so much Pat!!!

All Is Good

2009-11-20T09:45:00.001-08:00

Sorry that I haven't posted in so long. Things are very good. Ben had to stay home from school awhile longer after the last post because he was neutropenic but only for another week. He is back and so thrilled to be there. We just went back to the hospital for a blood check and received wonderful news - his ANC is up over 2000. Woo hoo!! They moved his meds up to 75% from 50%. We don't need to go back for 2 weeks when he will get Vincristine and another blood check. The expectation is that his numbers will stay strong and he will be put back to 100% of medication levels at that time.

On another note, Ben and David's hockey team won the championship. They were so excited. Yay Blue Team!

Visit to the School

2009-10-28T12:58:00.001-07:00

Although the doctors said on Sunday that Ben should be fine to go to school today...with everything that is floating around right now we decided to stay home an extra day to ensure his ANC had a good chance to come back up out of the neutropenic levels.

Even though he stayed home, we decided that since the Book Fair was taking place yesterday and today we would take a little trip over to the school so Ben would have a chance to pick out some fun books while the annex wasn't so crowded. He also had a chance to poke his head in to say hello to his teachers and classmates. Everyone was so excited to see Ben! He brought everyone a fun Halloween themed baseball hat that we received from the Playroom at the Cancer Center and everyone loved them.

Ben will go back to school for a half day tomorrow before we head back over to the hospital to check his numbers. We are hoping for really good news so Ben won't need to miss the fun Halloween carnival and parade at school on Friday and of course the fun night of trick or treating on Saturday!!

We Are Home!!!!

2009-10-25T20:52:00.000-07:00

After much speculation that we would need to wait until the official report from the CT scan, one of Ben's oncologists decided today that he was good to go home!!! We were so overjoyed! No words can express the excitement in the room. I think we were packed and ready to go in about 5 minutes.

We still do not know exactly what Ben had...but it was probably one of the thousands of viruses out there that they cannot test for. He still has a bit of a cough but no fever since Friday night. He is not able to go back to school quite yet, but should be able to by Wednesday. More than enough time to fully participate in all the Halloween festivities.

David is back home after spending much time with his Grammy and Poppy. Although we are so lucky he had such a safe and fun place to be during this whole ordeal, we are so happy to have him home. The boys were so cute upon reuniting (this was the longest they have ever been apart - the hospital did not allow visitors under the age of 18 during this horrible flu season). Of course, this was short-lived and they were back to their fighting and teasing and tormenting in no time :)

We also had the return of the puppies this afternoon! We were so happy to see Dakota and excited to see how much Cherokee has grown in the past 10 days. It was a crazy and noisy household by bedtime...just the way we like it! We are so grateful to have things back to normal!

The boys are sleeping soundly with Shaggy snuggling with David and Zorro loving up next to Ben! Yay!

Still in the Hospital

2009-10-24T20:49:00.000-07:00

Well, it is a week later and Ben is still in the hospital but it looks like there is a light at the end of the tunnel.

Ben's numbers continued to fall until his ANC was down to 100 and his fevers continued to spike up to 104.8+ (the little thermometer only goes to 104.8 so it may have been higher). Thankfully by mid-week his white blood count stopped the descent and started to ease its way back up but confusingly his high temperatures remained. Also perplexing, every test the doctors ran came back negative. Not the flu or other viruses they are able to test for, not a bacterial infection and not a fungal infection. Very frustrating! More than one doctor has commented that we may never know exactly what he had - just one of the thousands of viruses out there that there are no tests for. The great news is that after some medicine changes and of course being at the hospital for a week Ben's temperature finally seems to be under control. It has been under 100 without the help of Tylenol or Motrin since Friday night. He had a CT scan this morning and although the initial thoughts are that the images look good - the official report is still not in. We are trying to be patient but this is getting very frustrating!
We are crossing our fingers that they will discharge him tomorrow (of course we only have a chance of this if the fevers stay away) but it might be Monday because of the delayed CT scan report.
We are truly hoping that everything will be back to normal soon!

Ben is Back in the Hospital

2009-10-18T14:15:00.000-07:00

Ben started to feel a little under the weather last Wednesday evening. He stayed home from school but we weren't worried because his symptoms were very mild and he didn't have a temperature...but all that changed Thursday afternoon. His temperature shot up so we went to the Pediatrician just to have them swab his nose to check for the flu and to get a blood sample to check his numbers. We went back home until the results were ready and during that time he started to feel completely better and his temperature went down so they ended up letting us stay home with instructions that we would need to head over to the hospital asap if his temperature came back. Well it did early Friday morning. We spent the day at the Infusion Center with his temperature going up and down. We also found out that he was neutropenic. By the afternoon, the doctors made the decision that he would need to be admitted.

Unfortunately, he is still there. He is feeling much better and his temperature seems to be under control but his white blood count is extremely low - continued to fall during the weekend. Hopefully they will not need to keep him long...but we will see!

October

2009-10-09T11:45:00.000-07:00

Ben received Vincristine yesterday and started on his steroids for the month. All is fine, but he seemed a bit down at the hospital and didn't even want hot chocolate out of the cool new machines at the cancer center! At least by the end of the visit he started to exhibit some of his normal goofiness but the doctors and staff noticed a difference. His numbers were great (white blood count 1.8, hemogoblin 12.1, platelets 245,000 and ANC 1458) so the guess by everyone is that he is probably just tired of all of this stuff and maybe a little over tired. We are going to try to take it easy and go to sleep early...now if only we could get him to sleep in late!!

No Computer

2009-09-30T13:57:00.000-07:00

Well, I have been without a computer so that is why there haven't been any posts. Now I will try to recap how Ben has been for the last few weeks.

School started on September 2nd. The boys love their teachers and classmates and all has been going very well. Ben has two teachers, both men, which is a nice change for him. He has loved all his teachers at this school, they really have been awesome, but this year looks like it is going to be especially good for him.

Ben had Vincristine on the 10th and all went fine. He felt a little more yucky than normal after and unfortunately his days on steroids were really hard on him (and all of us) but he made it through!

The boys started up their new hockey season. We are trying a new ice rink for a variety of reasons and because of this both Ben and David are on the same team together with their best friend. They are having so much fun and having a great season so we are really proud of them.

We had a scare last week when Scott was terribly sick and hospitalized with a bacterial infection and some other issues. Thankfully, all is better now and we were so lucky that Ben didn't get it. Ben had a good time going through the menus with Scott and recommending all the good items - Ben said he was a little jealous that Scott got to eat the hospital food because that is one of his favorite things about being in the hospital. He just loves that food!

Only one more year!

2009-08-29T15:44:00.000-07:00

Ben has only one more year of chemotherapy!!!!! Seems like a long time from now, but not considering how long we've been dealing with this. We are totally excited and will celebrate tonight!!!

Ben the Fisherman

2009-08-27T21:47:00.000-07:00

Ben has done some fishing on this vacation, including his first fly fishing trip! Here are a couple of photos -- a rainbow and a pink salmon.

Made it!

2009-08-20T10:10:00.000-07:00

We made it through another month of steroids. Ben had a tough time again but he is now feeling like his old self again so we are happy about that.

Two more days of camp and then off to Whistler for fun days of fishing, swimming, hiking and relaxing. We can't wait!

Hockey!

2009-08-15T13:47:00.000-07:00

The boys had a tough time this morning. David was recovering from a scooter accident that left him banged up and with two loose teeth (thankfully they are baby teeth!) and Ben from his spinal tap. Ben's back hurt much more this morning than it did yesterday - maybe a full day of hockey after a spinal wasn't the best idea! Despite their aches and pains they both decided to play in their hockey games to wrap up the end of their great week at the Kings hockey camp. They both played so well and we are so proud of them.

At the end of the game awards were presented to a few of the players and we were so happy that Ben received the "Most Inspirational/Biggest Heart" award. We were so excited and proud! Certainly a well deserved award!!!

Long Day

2009-08-13T17:02:00.000-07:00

Ben had another spinal tap today. He was feeling very yucky this morning - tummy ache, headache, cough and his legs were sore too (but that was probably from the Kings hockey camp this week giving him such a good workout!). Plus not being able to eat or drink was getting to him by his appointment time.

After being examined by two doctors they decided that it was safe to go forward with the spinal. Ben was his usual goofy self and entertained all in the room while he was sedated. I was told he was was very talkative and funny during the actual procedure. Thankfully, it didn't take very long for him to come out of it today so we were home in time for David to be delivered home from camp by a wonderful friend.

Ben's back is a bit sore and we need to watch his cough and make sure he doesn't get a fever but otherwise all is good. His amazing nurse called with his numbers and they are all good: white blood count 2.2, hemoglobin 12.1, platelets 194,000 and polys 1562.

Now we just need to make it through the next 5 days of steroids :)

Ben is Awesome!

2009-08-07T10:13:00.000-07:00

Ben and David have been in chess camp all week and have been absolutely loving it! They like chess but I was nervous that they wouldn't be overly excited about doing it for the whole week even though it is just 3 hours a day. However, I have been pleasantly surprised at their response every day when I ask "how was camp?" They respond everytime, "It was so awesome!" or something similar that response.

I was a little worried yesterday afternoon because Ben started to feel a bit yucky and didn't want to go ice skating as we had planned to do. Then, at about 1:00 a.m. he woke up with a terrible cough. Fortunately, he woke up feeling great and when I asked him how he was doing he said, "Mommy, I'm fine. I can beat leukemia so I think I can beat that little thing!" He is so awesome!

Ben is 9!!!!

2009-08-03T16:14:00.000-07:00

I just can't believe he is getting so big. I am very happy to report that Ben declared his birthday and birthday party to be "AWESOME!!" He is so cute and fun and just having a great time.

We had a great weekend with a visit from Grandmom and a very fun party in the park with laser tag and a yummy cake made by Grammy! All is good!

All is Great!

2009-07-16T17:32:00.000-07:00

We went in for Vincristine and a blood check today. All is great! I am kind of glad that we didn't know that Ben's numbers were quite low last week (Poly at 633 and white blood count at 1.5) but the good news is that they are now terrific. White blood count 3.6, Poly 2459, Hemoglobin 12.5 and Platelets are 214,000. We feel good that we took so many precautions with the boys like having them sleep in separate rooms.

Ben still needs to finish out the Tamiflu but David is past the contagious phase of the flu so we can relax. Now we just need to prepare ourselves for the lovely steroid part of the month which started today. Hopefully they won't be too tough on him this month.

Only 2 more weeks until Ben's birthday. I can't believe he is going to be 9!

Flu!

2009-07-10T14:36:00.000-07:00

David has been fighting with a stuffy/runny nose for weeks now without any other symptoms but a couple of days ago he started with a low fever. After a visit to the pediatrician yesterday they let us know that he has the flu. Thankfully, Ben does not have it but the whole family has been put on Tamiflu to make sure that we aren't spreading anything to Ben. We are also using lots of Lysol, hand sanitizer and masks when needed!

We went over to the hospital today. Ben had his blood drawn but the nurse who normally takes care of him was out today so I didn't get a call with his numbers. I was told I would be called if there was a problem so...no news is good news!

Sorry!

2009-07-07T13:43:00.000-07:00

I guess I haven't had much to report. The boys did really well at Danielle's wedding. They looked absolutely adorable and performed their job perfectly. Unfortunately, Ben was having a tough time during the reception and David being a party animal didn't help matters in his mind. It was just unfortunate that Ben was on steroids.

Both boys have been fighting with small colds and we have had some scares with Ben's temperature, but thankfully it never went over the 100.4 mark so no extra trips to the hospital. Ben's numbers were slowly on the rise but not quite to where we want them to be. We are going in again on Thursday for another bloodcheck and hopefully everything will be back to normal.

The boys had last week and this week off of camp but they will be starting a sports camp on Monday which they are both really looking forward to!

Chemo Day Report

2009-06-18T17:08:00.000-07:00

Ben's numbers from Sunday were good (ANC 1302, white blood count 3.1, hemoglobin 14.1, platelets 209,000) so they put him back on his medications at a 50% level.

We went back in today for another bloodcheck and chemo (Vincristine). Ben did great as usual and his numbers were good (ANC 1187, white blood count 3.4, hemoglobin 13.3, platelets 314,000). They brought his medications up to the 75% level and we will go back in a week to check his numbers again. He started on his steroids today so we are really hoping that it won't be so tough on him this month.

We have a rehearsal tomorrow to get ready for the big day on Saturday (my cousin Danielle's wedding and Ben and David are ringbearers). We will post pictures of the boys in their tuxedos - they are going to be so cute!

Interesting Week

2009-06-14T06:57:00.000-07:00

We have had a jam packed week. The boys finished school just over a week ago and we quickly said our goodbyes at the school before racing to the airport to catch our flight to New York. Ben started coughing like crazy on the plane - it was practically nonstop, but thankfully he otherwise felt fine. We had a great time in NY visiting the Statue of Liberty, Empire State Building, and of course we couldn't miss the big toy stores (Toys R Us and FAO Schwarz) and the all important NHL store for the biggest kid in our group ;)
The highlights were visiting with family and a wonderful friend from college and her family.

Then we were off to New Jersey on Monday to spend time with Scott's Dad and visit with many other relatives. Unfortunately, Ben's cough stayed horrible so we needed to get him a blood check and chest x-ray. Thankfully, the chest x-ray was clear so pneumonia was ruled out. However, we discovered his numbers had sunk down. Too close to neutropenic for our comfort...especially when so far away from home! We made sure Ben wasn't exposed to anyone sick and bought a bunch of extra Purell! Ben's doctor put him on antibiotics and he was taken off the Mercaptapurine and Methotrexate until his numbers get better.

On Wednesday we headed to Philly. The boys experienced fancy Japanese food at Morimoto (anyone who watches Iron Chef will know about this chef!) and to the Ben and David's surprise...they liked the food! Here again we spent time with family and did as much sight seeing as we could - but trying like crazy to stay away from crowds that were too large. Thankfully, all of the cousins, aunts and uncles were healthy so we were able to spend a lot of time with them which was wonderful!

After some more sight seeing on Friday, we headed to the airport to come back home. Unfortunately, David started to feel yucky and on the ride to the aiport he started to vomit. It was not the nicest of flights but thankfully David felt all better by Saturday and Ben did not get sick!

We are off to the Cancer Center this morning for more bloodwork. Ben still has a cough but it is not nearly as bad so hopefully we will get some good news!

Help Christine Cwiertny Kick Cancer's $#@!

2009-06-04T09:16:00.000-07:00

Our good friend Christine Cwiertny and her team is doing a Light the Night event for the Leukemia and Lymphoma Society. Link is in the right margin or below if you want to support her! Thanks Christine! (And everyone please pray for her brother Matt . . .)

Spinal Tap

2009-05-21T14:12:00.000-07:00

Ben had another spinal tap this morning and all went well. Ben had some very interesting hallucinations and was cracking everyone up with his sense of humor. Ben said that I should share his hallucination, specifically that he thought he saw Mario and Luigi racing their cars on the cupboards in the room and he thought the cupboards were sand. I guess maybe he shouldn't play MarioKart right before a spinal ;)
He also thought my hair looked like water - I guess that probably went well with my 4 eyes, 2 noses and 2 mouths!

Ben's wonderful and amazing nurse called with the results of his bloodwork and all was great and right where we want them to be. Unfortunately, I did not have a pen when she called so didn't write them down but it was in the ballpark of white blood count 2.9, hemoglobin 12.9, ANC 1850.

Scott met us at the hospital and we all went for a delicious lunch.

Woo hoo. Another one down!

Two years down

2009-05-08T09:05:00.000-07:00

Ben was diagnosed two years ago today.

Needless to say, it's a bit of a strange anniversary. On the one hand, we're celebrating the amazing work of Dr. Hurvitz and her team at Cedars. If Nicole or I got what Ben has when we were kids, we wouldn't have survived, yet Ben is in remission and has a very good prognosis. We're also celebrating the silver linings of this whole thing -- we've all been forced to re-evaluate what's important in life, and we've been amazed by the incredible support we've received from friends, family, co-workers, and even total strangers. We've also been blown away by the strength Ben displays every day, not to mention David's ability to deal with the difficulties of having a rock-star brother.

At the same time we want to celebrate, I must say that it's a sad day too. It's not easy thinking about all the things we've gone through -- the fear, the stress, the challenge of helping a young child understand and cope with a deadly illness and the intensive treatment it requires. And we still have a long way to go -- 478 more days of chemo after today. Then we'll be hoping that the cancer doesn't come back for the rest of Ben's life, and also dealing with the long-term effects of chemotherapy.

Once again Nicole and I want to thank all of you for your interest, your support, your prayers and your love. This hasn't been easy, and you've helped us more than you could ever understand.

Another Month Down

2009-04-24T08:32:00.000-07:00

Ben had his monthly trip to the hospital yesterday and all went well - we won't make any comments about his wacky doctor and nurse ;)
I just love how we can be there for things that are really not very pleasant but we still end up laughing hysterically half the time. The people at Cedars are absolutely amazing!!
Ben was kind of having an off day yesterday. He was really tired and just kind of blue but all was fine health-wise. He was a good sport as usual and the doctor and nurse really did a great job of lifting his spirits.
His numbers were great - white blood count 2.4, hemoglobin 12.6, platelets 319,000 and ANC 1190. Ben's nurse reassured me that this is exactly where we want him to be.
He was a bit tired again this morning but all should be fine for his hockey practice tonight and his game this weekend.

Thanks so much, Brendan!

2009-04-20T10:10:00.000-07:00

Big thanks to Brendan Hahni, who decided to ask guests at his 4th birthday party to donate to the Pediatric Hematology-Oncology Fund at Cedars in Ben's honor. What an amazing thing for him to do, eh? We're very grateful to Brendan and his mom, Veronica. Here's the inside of the party invitation:

Back to School

2009-04-13T17:18:00.000-07:00

Well, the boys went back to school after having two weeks off for Spring Break. Everyone had a tough time getting up on time this morning but they had a fantastic day and were so happy to be back with their friends and teachers.

I just realized I never posted anything last week. After we returned from Hawaii Ben ended up getting sick and we had some worry about temperatures, but thankfully everything passed without any problems.

Ben also started on his new hockey team this past weekend - he is now on the Gold Team. They had a very exciting game on Saturday but unfortunately lost 2-1 when the other team literally scored a goal in the last second of the game. Ben was disappointed but so happy that Danielle and Alex came to watch the game and went out after for a fun dinner and lively air hockey competitions!

Fun in the Sun!

2009-04-05T11:57:00.000-07:00

We just returned from a wonderful week in Hawaii. We all had an amazing time. We spent our days relaxing, building sandcastles and swimming in the ocean. The trip was even more fun because we went with our good friends so we had nine of us all hanging out together. We were quite a group!
The boys, including Scott, learned how to surf. The instructors said Ben was the most talented 8-year old they have ever taught. He was truly amazing out there. I guess he is a surfer dude at heart :)
Scott also chartered a boat and took Ben, as well as Ben's best friend and his Dad, out fishing. They caught many fish and even brought one back to have as sashimi for lunch. Oh, and I can't forget to mention that Ben and Scott swam with dolphins and David and I swam with rays and sharks.
What a fantastic week!

Good Numbers Again

2009-03-26T17:19:00.000-07:00

Ben had his blood check and Vincristine today. He was wonderful as usual. His numbers are great - white blood count 2.2, hemoglobin 12, platelets 225,000 and polys 1415. We are so relieved that he didn't catch the strep throat that David has suffered with over the past week.

We did find out something new that explains a lot. During a discussion about what he wants to be when he grows up, Ben said that his first choice is a professional hockey player (second choice is veterinarian). The doctor commented about how that might be tough and that it is astounding that he can play hockey now. She explained that the Vincristine messes with your nerves and makes the patient lose their reflexes. She then tested Ben's reflexes...and he basically has none. I commented that his running is totally different and his general athletic abilities have decreased. The doctor said that this is normal and that many people on Vincristine cannot run or play any sports because their coordination is completely off. Hopefully, his coordination and reflexes will return when treatment is done...but there is no guarantee of this. Some patients do not recover this ability so we will just have to wait and see.

Go Away Cough!

2009-03-14T11:08:00.000-07:00

Ben has a bit of a cold and also a bit of a temperature (99.4). We are really hoping it doesn't creep up (we are safe until it hits 100.4). We don't want to take an unexpected trip to the hospital this weekend. Thankfully, he is in bright spirits and is feeling better than he did this morning so we are optimistic that all will be fine. We will keep you posted!

Ben's Big Game

2009-03-09T11:35:00.001-07:00

We are so proud of Ben and his team for making it to the championship game this past weekend. They worked together so well and the coach is just absolutely amazing. Unfortunately, they did not win the game, but they played hard and were still happy with their 2nd place medals. I feel so fortunate that Ben was able to have such a great season. To think of how different his life is now compared to a year and a half ago is pretty amazing.

All I can say is Go Ben Go and Go Purple Team Go!!!!

We are off for a couple of weeks and then a new season will be starting up again. We can't wait!

New Pet

2009-03-04T14:40:00.000-08:00

First, and most importantly, we all survived another month of steroids and Ben is feeling great!

Second, somehow the boys talked us into getting another pet (although anyone who knows me well knows that it is pretty easy to talk me into getting anything with fur - and honestly I can pretty much guarantee that the boys will talk me into a lizard or snake as soon as Ben is done with treatment and can have one). The new pet is an incredibly cute dwarf hamster and his name is Snuggles. He is a small but fun addition to the family.

Better Day!

2009-02-28T19:29:00.000-08:00

Ben woke up feeling much better this morning. His tummy did not hurt and although his back was sore it was much much better! Ben was absolutely determined to play in his hockey game this afternoon because it is the playoffs. He had a fall near the beginning of the game which took its toll on his back...but the great news is that his team won 4-1!!! They are off to the championship game next weekend. He is very excited!

Feeling Lousy

2009-02-27T20:00:00.000-08:00

Ben went to school this morning even though his back was hurting a little bit. He really didn't want to miss the school day. He promised that he would have the teacher call me if he was in pain (plus I called the teacher to give her the head's up). David was MVP in his class today so Scott and I were at the school around lunchtime to take part in the presentation, which was extremely cute, so we also had a chance to check in on Ben at that time. Ben said that he was still in pain but he really wanted to finish out the day. Unfortunately, things went down hill as the day progressed. By the end of the school day Ben's back was really hurting and his tummy was really upset - he just broke down and sobbed when we got home. He decided there was just no way he could handle hockey practice so we watched Prince Caspian (the boys loved it) and they took a nice long bath but Ben was just feeling awful by bed time. You could tell just by looking at his face what a toll the past couple of days has taken on him. We have a couple of different medicines to help with the tummy trouble created by the chemo...but he just broke down when I mentioned them and begged between sobs not to make him take another medicine. He said, "I have taken so many different medicines the past two days and it has been really tough on me. Please don't make me take anything else!"

The poor guy. I think a good night's sleep is going to make a world of difference. I am really hoping and praying that is true not only because this is so tough on him but also because he has a playoff game tomorrow afternoon for his hockey team. If they win they will go to the championship game next weekend so he will be so sad if he is too sick to play.

Spinal

2009-02-26T15:49:00.001-08:00

Ben was sad this morning because we needed to go into the hospital for his spinal tap but we went and all went great! He was a little more serious than usual at the beginning but then after he got some drugs in him he was a regular chatter box. He had everyone cracking up as usual. Before he was even able to flip over (he needs to spend quite a bit of time on his tummy right after the procedure for the maximum effect of the medicine) his nurse called with the results of his labs and everything was great. White count at 2, hemoglobin at 12.2, platelets at 185,000 and polys at 1234. Oh, and because he has grown his medications have all been increased - at first he did not like the sound of this but I went through the increases and showed him how small they are so he decided it was okay after all.

Ben was feeling great after the procedure so we went for a special lunch with Scott and also had a chance to hang out in Scott's office. Ben was determined that he not miss his guitar lesson this afternoon so after a short rest at home I drove him to school for the class. He has a little bit of difficulty going up and down stairs and his back bothers him in certain positions but he was not going to miss that class! I think after this long day he is going to sleep well tonight!

Sad Day

2009-02-25T18:20:00.000-08:00

Today is not sad because anything in particular happened and Ben is fine, with the exception of being upset he needs a spinal tap tomorrow, but I am just blue today.

I was looking up an article on leukemia for a friend and started reading some of the information about relapse and long term side effects from all of the drugs needed to get rid of this terrible disease. I have read all these things in the past and know the facts...but it just hit me like a ton of bricks today. I go day to day focusing on the positive - sometimes because I feel I need to for the sake of Ben and David but most of the time because that is how I truly feel - but today was not one of the those days.

I'm angry and sad and just frankly feel like this all sucks. Ben has been through so much and so has David and it is just such a terrible feeling to feel so helpless and at the mercy of a disease. All I want to do is to protect my children and I feel like I can't do that. This is such a horrible feeling. I have a wonderful and amazing child who has to deal with things no child should ever have to deal with and it just breaks my heart.

I know tomorrow I will wake up and we will get ready for the hospital and we will be our normal goofy selves...but tonight I just want to crawl into a corner and cry myself to sleep.

Whale Watching

2009-02-21T08:10:00.000-08:00

Ben had a fantastic day yesterday with his 2nd grade class. They went out whale watching and saw a whale as well as seals and dolphins. He was so excited!! He brought a disposable camera so we are going to get the film developed this weekend - hopefully he got some good shots.

We have a busy day today. Hockey class for David in the morning, Ben's hockey game this afternoon and then a great friend is having a birthday party. She has asked that in lieu of presents everyone make a donation to the Cedars Pediatric-Oncology fund in honor of Ben. Such an amazing and wonderful thing! Thank you Tanya!!

Monday Update

2009-02-16T22:02:00.000-08:00

We had a bit of a scare last night with Ben having a very upset stomach and vomiting (even with no chemo) but all is great today. Ben woke up this morning feeling great and was excited to go to the Staples Center and skate with the Kings mascot, Bailey, as well as a bunch of other NHL mascots. David had a great time harassing all of the other NHL team mascots (he was nice to Bailey) and Ben had fun getting autographs from them!

Great day!

Back to school tomorrow after a nice 5-day weekend. The boys are happy to see their friends and teachers...but I'm sure won't be motivated to get up and moving first thing in the morning!

Saturday Update

2009-02-14T09:44:00.000-08:00

Nicole, David and I all are fighting off what seems like a minor cold. No big deal for a normal family, but if (more likely, when) Ben gets it there is always the risk of him ending up in the hospital. So we're hoping we get through this with no problems.

Happy Valentine's Day to everyone!

Whew!

2009-02-03T14:40:00.000-08:00

Ben took the last of his steroids for the month last night so we are all relieved. The steroids were particularly rough on him this month, as was the Vincristine, so hopefully he will feel 100% again soon. Of course, it didn't help that he was also dealing with a bad cough all weekend and he missed another day of school yesterday. But things are on an upswing today so we are happy!!

Go Belen!

2009-02-02T12:37:00.000-08:00

Belen Scully-Power, a lawyer at Scott's firm, is doing a Team-in-Training event to raise money for the Leukemia & Lymphoma Society. If you'd like to support her, go here:

http://pages.teamintraining.org/los/sdtri09/bscullypower

Thanks Belen!!!

Chemo and Good Numbers

2009-01-30T15:04:00.000-08:00

I picked up Ben early from school yesterday to go get his Vincristine and a blood check. All went well with the chemo and the blood results were great. Hemoglobin at 12.8, Platelets at 217,000 and ANC at 2126. Ben was feeling pretty good so he was able to participate in a school event for the 2nd graders in the evening. The theme was Chinese New Year so the children made a presentation giving the parents information about what they have learned and then performed a fun song. Ben played the xylophone. After the performance we proceded into the classroom to play fun math games. The night was a big success.

Ben started with a small cough last night that we didn't worry about too much as it wasn't worse this morning before school. However, later in the morning I received a phone call that I should go to the school to pick him up because he wasn't feeling well. Not only had his cough gotten worse but he was also having major tummy trouble - most likely from the Vincristine yesterday. We are laying low today hoping that he will be able to do all the fun things planned for the weekend like go to a birthday party and play in his hockey game.

Big Night

2009-01-20T08:45:00.000-08:00

Okay, so this is not related to Ben's health...but David lost his first tooth last night!! David has been waiting for this for months and months and at some points has even asked Ben to punch him in the mouth just so he could lose one. But it finally happened (and thankfully it was naturally with no need of a punch)!! He was very excited to get his dollar and a Magic School Bus book about a missing tooth this morning. Yay!

New Link

2009-01-16T16:38:00.000-08:00

We started a "Cause" page on Facebook that allows you to donate money to the Cedars-Sinai Pediatric Hematology-Oncology Fund. If you're on Facebook, please join the cause and invite your friends! There is a link at the right margin.

Hockey Hockey Hockey

2009-01-10T19:23:00.000-08:00

Ben had a bit of a tough week. The boys started back at school. They were happy to be back but Ben was very tired and cranky. We kept things very low key but he still had a tough time. He started getting a cough last night which sounded absolutely terrible this morning. But after some honey and a lot of rest he was feeling well by the afternoon.

David started his hockey class this morning and had a great time. After resting all day and with a lot of begging and pleading by Ben we decided he was well enough to play hockey this afternoon. He was playing against his best friend so he REALLY wanted to be there. It turned out great and Ben's team won 5-1. Thankfully Ben still was feeling great after the game and the cough did not return. Scott is playing tonight so we are hoping he will also have a great game.

We received a question about how soon Ben was able to play sports after being diagnosed. Ben did not do much of anything, other than go to the hospital, for the first 9 months. After going into the Maintenance Phase of his treatment he was more active at school in PE and on the playground but still was not energetic enough for a team. By about the 12th or 13th month he was feeling great and by the 15th month he was totally back on the ice. He wasn't 100% in terms of energy and stamina but still feeling well enough to get on a hockey team and do well! I think he lost a bit of skill and speed being off the ice for so long but he is a fighter and he gets better every week.

Brand New Year

2009-01-03T10:23:00.000-08:00

I realized I forgot to post an update after Ben's hospital visit earlier this week. All went fine. Unfortunately, there was a little difficulty with Ben's vein and it burst after the Vincristine so they were unable to draw blood from it so he needed to get a finger poke instead. Ben was great as usual and we were very happy to get the news that his numbers are good. White blood 2.1, ANC 1609, Hemoglobin 12.9 and Platelets 225,000.

Ben has been very cranky and tired for the past couple of days but that is probably just from the steroids. He has a hockey game today so he is trying to get motivated for it. We had some great friends come over yesterday evening and we all had so much fun eating and catching up and all the kids had a great time running around like maniacs!

Winter break is coming to an end. The boys are excited to see friends and teachers...but not so excited about homework and needing to go to bed on time. We've had a great couple of weeks but it will be nice to get into a normal routine again. We just need to keep everyone healthy!

Happy New Year!

Ben's New Year's Thoughts

2008-12-31T08:49:00.000-08:00

(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.)

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

2008-12-21T17:46:00.000-08:00

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!

Ben the Playmaker

2008-12-14T08:20:00.000-08:00

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!

Karate Kids

2008-12-11T16:20:00.001-08:00

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!

Another Spinal Done

2008-12-04T17:19:00.000-08:00

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!

A Very Happy Thanksgiving

2008-11-27T11:57:00.000-08:00

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.

Cleared for Thanksgiving

2008-11-26T12:39:00.000-08:00

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!

Break from the Hospital

2008-11-25T14:55:00.000-08:00

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!

Up Down Up Down

2008-11-23T14:31:00.000-08:00

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!

Good News

2008-11-21T14:53:00.001-08:00

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.

Still Home!

2008-11-20T20:15:00.000-08:00

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

2008-11-20T16:43:00.000-08:00

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

2008-11-20T15:19:00.000-08:00

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.

He shoots, he scores!

2008-11-16T09:59:00.000-08:00

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!

Feeling Better

2008-11-12T12:38:00.000-08:00

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!

Chemo and Report Cards

2008-11-07T14:07:00.000-08:00

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!

Scott is 40!

2008-10-30T10:20:00.001-07:00

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.

They shoot, they score!

2008-10-18T22:02:00.001-07:00

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!

Numbers

2008-10-10T11:18:00.000-07:00

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.

Another Infusion Done

2008-10-09T20:18:00.000-07:00

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.

Watch out, David Beckham!

2008-10-04T12:33:00.001-07:00

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.

Fight leukemia by playing video games!

2008-10-03T17:22:00.000-07:00

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

http://lls.play2cures.org/

Weekend/SportsCenter Update

2008-09-28T09:26:00.000-07:00

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!

Never ending cough

2008-09-25T22:00:00.000-07:00

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!

First Hockey Game

2008-09-22T20:03:00.001-07:00

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.

Blood Donations Needed!

2008-09-18T08:01:00.000-07:00

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.

Steroids

2008-09-16T17:59:00.000-07:00

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

He is feeling and looking great!

Another Spinal

2008-09-11T14:23:00.000-07:00

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.

Some photos

2008-09-06T18:36:00.000-07:00

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!

School

2008-09-05T12:57:00.000-07:00

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!

Two More Years!

2008-08-29T17:07:00.000-07:00

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.

Countdown . . .

2008-08-21T09:22:00.000-07:00

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!

Some photos

2008-08-17T08:22:00.000-07:00

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

Good Numbers Again

2008-08-15T17:22:00.000-07:00

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.