Friday update

Ben's hemoglobin and platelets have improved and look good. White blood cells still low, so he's staying on neutropenic precautions. Some improvement from last test, so that's good. We have two more days of oral antibiotics, then hopefully we start Maintenance on Thursday.

I was able to take a couple days off of work, so that's good. We're having a nice end of the year and are looking forward to USC's humiliation of Illinois in the Rose Bowl. :)

TGIF

We're at the Cancer Institute for a quick visit. Ben just had the dressing on his PICC line changed. They used a new dressing that's see-through, which is really cool if you want to see the line going into his arm (and gross if you're squeamish about such things). Ben loves it.

We're waiting for blood test results. Once Ben's numbers come up, we can start the Maintenance phase and get the PICC line removed! I'll post an update when we get the results.

A short delay

We went to the hospital for a blood check today and found out that Ben is still neutropenic - number is at about 90 so way under where he needs to be for Maintenance to begin. Unfortunately, Ben will need to take the yucky antibiotic until the number goes up. We are scheduled to go back in on Friday morning for another check. The expectation is that it should bounce back up and that Maintenance can start next Thursday. Ben was very disappointed but mostly just upset that he needs to take the oral antibiotics which he really does not like.

Still Quiet

There hasn't been much to report lately, which is a good thing. Ben was able to attend the last day of school before Winter Break last week and he had an amazing time. He was just so happy to see his friends and teachers and cannot wait for school to start up again in January.

I have tried to take the boys to do some things outside the house but they have just wanted to stay home and play together. Although they still drive each other a little crazy from time to time, at least some of the tension that had been between them for the past few weeks has dissipated and they have been having a lot of fun playing games together. They especially had fun yesterday teaming up with each other to beat me in baseball. Soccer is on the schedule for today.

Ben and David cannot wait for Christmas and are trying to be extra good because Santa is watching. (David had been a little worried for awhile that he might end up on the naughty list but he has been very good lately!)

We go back to the hospital Wednesday morning to see if Maintenance will begin on Thursday as expected. Ben looks and feels great so we hope and believe that his numbers will be where they need to be.

Fantastic News!

Ben's hemoglobin had dropped again so he received a transfusion yesterday. His platelets are going up and his white blood count was pretty similar to last Friday. The fantastic news is that the Maintenance Phase is going to start next week if all goes as planned!!!

Ben is scheduled for a blood check next Wednesday and if his numbers are where they need to be Maintenance will start on Thursday. The first day involves a spinal tap and vincristine via his PICC line - the current plan is to pull out the PICC after the procedure and chemo has been administered. He will also be starting the oral medications at home.

Ben wasn't really listening yesterday when his nurse came in to explain everything and give me the roadmap for the next phase (he was distracted by the Fun Center). It was very funny this morning when he asked me when we need to leave for the hospital. I told him we don't have to go to the hospital today and are not scheduled to go again until next Wednesday. His jaw just about dropped on the floor. He couldn't believe it and was so happy and excited! The doctor said that he gets to go to school tomorrow for the last day before Winter Break so we went out today so that he could pick out presents for his teachers. He cannot wait for tomorrow morning. (He says that he wants to shave his head again tonight so that his head is very smooth and nice for school tomorrow!)

Ben said that the only sad thing is that we won't get to see all the wonderful people at the hospital as much. I told him that he will see his doctor and favorite nurse when we go in but hopefully will not need trips to the Infusion Center but we can always poke our head in and say hello. The people at Cedars have been so amazing throughout this entire process. I really don't know how we would have gotten through it without them.

I have been walking around on cloud 9 today. This has been such a roller coaster ride now for eight months. I am looking forward to getting some normalcy back in our lives!

Celebration!

Since Ben isn't neutropenic anymore and he's basically done with Delayed Intensification, he got to pick what we'd do to celebrate. He picked fishing in the ocean. So we chartered a boat and went with David and Poppy. Here are some pictures. Ben and David got to drive the boat a little!

Bald Ben's First Blog Post!

Today I shaved my head! And I shaved Daddy's head too! And I'm not neutropenic! Bye!

Mixed Numbers

The past two days have brought slightly better white blood counts but lower hemoglobin and platelet counts. Ben received antibiotics yesterday and was able to take part in a small Hanukkah party in the playroom at the hospital. Chai Lifeline came and played music and had a wonderful magician named Pun who was hysterical. The people were amazing and made Ben feel so happy and special. They even had a backpack full of toys and games for Ben and a great gift bag to bring home to David. Pun taught Ben how to tie a knot in a rope with one hand and Ben has had a great time showing off his new skill.

This morning was the usual routine of blood work and antibiotics. Ben's Poly's are up to 295 which means he is still neutropenic but at least the number is going in the right direction now! His hemoglobin is at 7.6 and platelets are at 65,000. There don't seem to be automatic numbers at which point they order transfusions but we are probably getting pretty close, especially for the hemoglobin (he received a transfusion last weekend because it went below 7). We will see if they continue to go down during our hospital visit tomorrow morning.

The boys are now playing with a friend and having a great time. Ben hasn't had a play date in a very long time and is thrilled to have this spur of the moment play date with his best friend!

By the way, Delayed Intensification is over!!!! Ben took the last of the Thioguanine last night! No more medicine (other than the antibiotics) until his numbers go up and he starts Maintenance. WOO HOO!!!

Still Low

Ben's numbers are still low but he is feeling pretty good. He has been in a great mood today! We had our normal hospital visit this morning but it was pretty short - he just had labs drawn and received his two types of antibiotics. We were out of there in about 2 hours! The labs indicated that his numbers remain low as expected. Polys are 68 (normal 1800-8000), Hemoglobin 8.3 (normal 11.5-14.5) and Platelets 101,000 (normal 150,000-450,000). They have extended his appointments for antibiotics for an additional week so now scheduled until about the 21st of December.

There was a great party scheduled for this afternoon at a wonderful hotel in Beverly Hills for the pediatric oncology patients to go and decorate cookies and eat fun food. Unfortunately, we were told that due to Ben's extremely low white blood cell count that we really shouldn't risk going. No sense risking an infection for an hour or two of fun. Ben was disappointed, but since I have just about every shape and color of sprinkle ever made I promised Ben that we will bake our own cookies and have fun decorating them here.

Milestone

Ben received the last of the Cytarabine (aka ARA-C) today. He is on day 39 of Delayed Intensification. This is very important to me as this should be the last (if I am understanding things correctly) of the drugs that really impact his counts. Ben's numbers are not so great at the moment. Polys are at 77, which means he is still neutropenic (neutropenic if below 500 - normal is between 1,800 and 8,000). Hemoglobin was at 6.7 this morning (normal is between 11.5 and 14.5) - but he received a transfusion today so the number should be better tomorrow. His platelet count is at 130,000, normal is between 150,000 and 450,000 - so not too low compared to the summer at this point. His spirits are high and his energy level is really pretty good considering what he has gone through the last two weeks!

I spent over 6 hours in an Infusion Center room today with two young boys and they actually got along pretty well. Everyone always comments about how well behaved Ben and David are. Ben is one of the best patients ever and David is a great little brother (extremely well behaved for a 5-year old trying to cope with everything!!). We have had a few new nurses in the past few weeks and they always come in saying that they have heard so much about these amazing boys and how fantastic they are...I always love that by the end of the treatment time they tell me that the stories that they had heard were not exaggerated. Such amazing boys!!!

Ben only has a few more days of Delayed Intensification - only receiving Thioguanine in the evening. Due to his low counts the antibiotics at the Infusion Center are scheduled all week and they will need to monitor his numbers very closely to see if more blood product tranfusions are necessary but from our standpoint the tough stuff is close to an end! We are a little nervous that Ben has a cough and stuffy nose but up until now his temperature has been normal so we are really hoping and praying that it doesn't turn into something more serious that will cause him to be hospitalized. Not a great time of year to have your defenses down!

By the way, Ben has decided that when his Daddy returns from his business trip next week that he is going to shave the last little wisps of hair he has left. Up until this point, he really hasn't seen himself as bald but now he sees that he doesn't have much left so he might as well shave it off. He is not upset about his hair being gone, he is only nervous about getting cut. It should be fun to have the two guys shave their heads at the same time...of course with Mommy supervision! We will take pictures!

Down Down Down

Ben had more chemo today and a blood test which showed that, as expected, his numbers have come down. He is neutropenic again (number is down to 184) which he is not happy about but we knew it was coming. Ben's doctor gave him the choice between taking the oral antibiotic at home which he really does not like or coming to the hospital everyday for antibiotics through his PICC line. To our surprise he chose to take the Cipro at home...but this decision didn't hold and after we left the hospital he decided that after further thought that he would prefer the daily trips to the hospital. He needed to take the Cipro today but will start with the other form tomorrow morning. We will be at the Infusion Center anyway for the next few days for chemo so this just means we will need to stay a little longer. His hemoglobin and platelets are also coming down so they drew blood to send to the blood bank to get blood ready for him for transfusions if needed. All you donors out there who can donate blood - now would be a good time to take a trip over to the hospital! If this is anything like the summer his numbers are going to be low for awhile and may need transfusions.

After we were done at the hospital we took a quick trip over to Grammy and Poppy's house to look at all her chocolates and get some goodies. Then we picked up David from school and went over to the hospital for a Holiday Party for the pediatric cancer patients. Santa made an appearance and the boys had fun making some special requests (and of course David just had to try to pull off his beard). There was also a dancing group that came and performed. The dancers called for volunteers to come up and learn a little dance and David was one of the first ones out there (Ben was a little too shy). The boys had a fun time and received a great goody bag with toys on our way out. It was so great for the hospital to put this on. With Ben being neutropenic he will likely miss out on many of the upcoming parties so it was nice that he was able to join in the celebration!

DI Update

Things are going well. As we had hoped Ben was able to go to school yesterday and today which he is so happy about! He even played soccer yesterday!

Although he had a slightly bad reaction to all of the medications he received on Thursday (vomiting and bad tummy ache on Friday) he has been feeling much better and not feeling much of anything from the ARA-C received on Friday, Saturday and Sunday. We found out on Sunday that his numbers are starting to come down but are still relatively good. The expectation is that they will be down considerably by the next blood test on Thursday. This is all normal and just a reaction to all of the chemo.

We will be our usual careful selves about germs and not going to enclosed public places for awhile, but hopefully only for a couple of weeks.
I cannot believe we are in the home stretch of all this intense therapy and getting close to Maintenance. I will give an overview of Maintenance soon. Maintenance should be so much easier than what Ben has had to endure over the past 7 months. It is very long but less intense.

OK, my hair's fixed.

Better?

DI Day 29, Part 3

The cytarabine is in and the cytoxan (aka cyclophosphamide) is going in now. We're trying hard to watch The Phantom Menace (aka Star Wars Episode I), but the DVD player provided by the hospital keeps freezing. We'll bring our own next time! Of course, this is another good reason to donate to the hospital (links to your right). :)

DI Day 29, Part Two

The infusion center has been REALLY busy lately, so we couldn't get in until 2. We had lunch at Jerry's Deli to pass the time.

Nicole went home to pick up David; I'm with Ben. He's getting hydrated for Cytoxan, the mustard gas derivative that's so hard on his kidneys. Once he's ready, he gets the drug, then he gets hydrated for a long time afterwards before we can go. We're playing video games.

One of Ben's doctors just came in to see my hair. Apparently word is spreading rapidly through the hospital and everyone thinks this is highly amusing. My efforts to simulate a chemo haircut apparently were not so fabulous. LOL

I'll shave my head entirely later. :)

Delayed Intensification, Day 29

Big day today, so I took the day off to join Nicole and Ben for the festivities. We just finished our intrathecal methotrexate injection (spinal). Ben is waking up, and we can tell we're almost ready to go because he's playing his PSP.

We have lots more fun planned in the Infusion Center next. Oh, they're letting us go. More to follow.

Good Numbers

Ben's numbers are great and his back continues to heal so all will go forward tomorrow.

Tomorrow will be a long day starting with a spinal tap in the morning. After that procedure is complete we will then move down to the Infusion Center so that Ben can receive Cytarabine (ARA-C) and Cyclophosphamide (Cytoxan). We have the Infusion Center room booked for 10 hours but I certainly hope we won't need it that long! He will also receive the Cytarabine on Friday, Saturday and Sunday but those should be much shorter days - we will probably only be there for about 3 hours.

We received some amazing news today. Due to the fact that it usually takes about a week or so before the chemo really starts making his numbers go down there is a chance Ben might be able to go to school for a couple of days next week. As long as Ben is feeling good and strong he can get in a few more days of school. This was such a wonderul surprise. We walked out of the hospital smiling from ear to ear!

Twins

Well yesterday was a big day. Even though Ben still has a little bit of hair left they decided it was time for Daddy's hair to come off. We don't own clippers so the boys did the job with scissors. They had so much fun! I was a little worried the boys might get a little scalp along with the hair but they were very careful. They finished up the job by shaving the back of Scott's head as that is where Ben has lost all his hair.
Now Scott looks like Ben - two very handsome boys!

Great News

Ben's numbers were great today and because he has not had a temperature and is feeling well the doctor decided to take him off both antibiotic pumps! Ben was so excited. Even better, if he feels up to it, Ben gets to go to school tomorrow!!! It will likely be the only day he will be able to go until January but he is excited just the same. We will go into the hospital Wednesday morning so they can check his numbers and examine the infections on his back but if all goes as expected the second half of Delayed Intensification will start on Thursday. Today has been a nice day of great news - we like these days!

Monday Update

Ben's numbers are much better. Last night we got a call from one of Ben's doctors with blood culture results. The lesions on his back are not from a bug bite, but from a bacterial infection. We had to go get him another antibiotic (an oral one) and wake him up to give it to him. Anyway, we are hopeful he can go back to school soon. We'll see. He sees Dr. Hurvitz this afternoon. Perhaps we'll start the next part of Delayed Intensification.

Much Better

Ben had a very peaceful night. His temperature is back to normal and we learned at the hospital that his numbers are very good. He is no longer neutropenic! We were very happy to hear this as they were discussing whether to admit him due to a strange infection on his lower back. Had Ben's numbers been lower than yesterday they had decided to admit him so we were nervous waiting for the blood test results!
The infection started yesterday morning with what looked like a very small bug bite. The area of redness has become much larger and extremely painful for Ben. We are putting warm compresses on it and watching it very closely. The nurses and doctors will also be watching it closely on our now daily trips to the hospital. We hope it goes away soon!

X-rays negative

So that's good.

We had a delicious turkey dinner from Jerry's Famous Deli. Ben got a special Thanksgiving cupcake and some cookies, so he's doing OK. He's watching "Fetch" on TV, while we wait for more test results and news on whether he's getting admitted or not. His temperature is still very high, so we're thinking we're going to be admitted, but we'll see.

We hope no one checks the blog until tomorrow, as we want all of you to enjoy Thanksgiving!

Thankful!

We are going home now. Ben will wear the pump to get IV antibiotics. It will be great to be able to sleep in our own beds!

I'm dropping Nicole and Ben at home, then I'll go pick David up from Nicole's parents' house.

Phew!

[note: this was posted via Blackberry and the time got messed up -- it should be above the post above . . .]

Not So Happy Thanksgiving

Thanksgiving started off OK, but around 1 Ben's temperature shot up to 104 (from 99 this morning). So we are at the Infusion Center at Cedars (Nicole, me and Ben -- David stayed with Nicole's family to have Thanksgiving dinner).

They are testing Ben's blood now, and he'll get a chest x-ray in a little while. Then, we'll wait to see what the doctors order. We might be able to go home tonight, probably with an antibiotic pump, or we might get admitted to the hospital.

The good news is that the deli across the street is open today, and they serve turkey dinners. So I'm planning to go get three of them after Ben gets back from x-ray.

Hopefully everyone else is having a good day. We're making the best we can of ours. It could be much worse, of course, but it really sucks for a seven-year-old kid to have to be in the hospital today.

Delay in Delayed Intensification

Well, tomorrow will not be a long day as we previously thought. The second half of Delayed Intensification needs to be put on hold...probably for about a week. Ben's numbers have not come up to a point where the doctors can proceed.

Ben is still neutropenic. His ANC number is at about 380 so still under the 500 mark and needs to be up to at least 750 for the second half to go forward. It is possible they wouldn't have gone forward even if at 750 or above because Ben has a little cough and runny nose and they wouldn't necessarily want to put him under for a spinal tap if even a little under the weather. The doctor put him on an antibiotic, but thankfully not the one that he can't stand.

Of course, we would like to just get this phase over and done with but on the bright side it certainly makes Thanksgiving easier!

By the way, Ben seems to be getting braver on a daily basis. The nurse was having difficulty drawing blood from his PICC line so Ben said, "why don't I just go over to the lab and they can poke me to get the blood sample." Karen and I looked at each other in shock because a few months ago even the thought of going over to the lab made him start to get nervous. I told him how proud I was of him and he just responded, "Mom, it really isn't something to get upset about, it only hurts for a second and then we don't have to drive everyone crazy trying to get the PICC line to work." As I have said in the past, and am sure will say many times again, Ben is an AMAZING boy!! He is getting a dressing change on his line tomorrow and the stat lock that is giving us so much trouble will be changed so this shouldn't continue to be a problem.

Tough Week

I like to start with the good news so I will say that Ben's mouth sores are doing well and his appetite has increased. Unfortunately, his legs have been hurting very much and his energy is way down. We have been keeping things very quiet for the past few days. Ben is out of bed to watch television, play cards and draw pictures but doesn't have enough energy for much of anything else. Unfortunately, David has been off of school for the past couple of days and has been full of energy which, of course, just upsets Ben. I was a bit concerned yesterday and was planning on bringing him to the hospital despite his normal temperature and good color just in case I was missing something...but I was told that considering what his little body is going through it is very normal to be tired and cranky!
We are not scheduled to go back until Tuesday for a blood test to see whether the next half of Delayed Intensification will start on schedule.
Scott is coming back into town tomorrow so the boys are so excited to have Daddy back!

Good News

Ben is still neutropenic but the good news as his number did go up from around 200 to just above 300. Because it is going in the right direction the doctors decided that Ben no longer needs to take the antibiotics that he dislikes so much. Ben couldn't believe it - he was so happy! Thankfully things are very slow this week medicine wise. No chemo scheduled until next week and that is only if his numbers are high enough. I forgot to write the numbers down but I believe his ANC (white blood count) needs to be at least 750 and his platelets need to be at least 75,000. His platelets are doing fine so we just have to wait and see how his white blood count does. If the numbers are high enough the second half of Delayed Intensification will start next Wednesday with a very long day starting with a spinal tap in the morning and then we will move down to the Infusion Center for more chemo and LOTS of hydration - I think about 8 hours worth. We have mixed emotions about whether we want the numbers to go up quickly. Of course we want things to move along and get this last tough stage over with...but Ben wouldn't mind not getting chemo on Thanksgiving!

Ben is still having some discomfort with the heartburn pain but nothing like the weekend and as I said before he was doing a little happy dance that the horrible tasting antibiotic is now off the daily schedule of medications!

Tough Weekend

I will start with the good news. Ben is starting to feel much better!

The bad news is that Ben had his most difficult weekend in terms of feeling terrible. At one point he turned to me and said, "I feel like I am dying." It absolutely broke my heart that he felt so awful and the medications just didn't seem to be working. He was in constant pain between his tummy and what he described as heartburn. It is unclear whether the pain in his chest was heartburn from the steroids or whether the sores in his mouth went down his throat. Either way, he was in constant pain. He was hungry from the steroids...but swallowing anything, including his own saliva, was so terribly painful that even the thought of eating or drinking made him cry. He doesn't like the medications he is currently taking (steroids, antibiotics because he is neutropenic, antibiotics to fight off a particular type of pneumonia that kids with leukemia are susceptible to, Zantac, Nystatin for the mouth sores and Lactulose for the constipation) but taking them is even more difficult for him when it hurts to swallow. He kept saying that he wished the doctors would admit him into the hospital so that they could just give him all his medications through his PICC line. UGH!! Poor guy.

As I said, thankfully things finally took a turn for the better this evening and he was able to eat and drink a little without too much discomfort so he is very happy. Ben is looking forward to his visit to the hospital tomorrow. He is really hoping that his numbers will be up above 500 so he will no longer be neutropenic (he really cannot stand that antibiotic!). He keeps saying that he knows that it probably won't be up there by tomorrow but he is still optimistic!

We are hoping for a quiet week with just blood draws to check his numbers. No chemo this week and the steroids end mid-week (woo hoo!). As usual, we will be keeping a close watch on his temperature, staying extra clean and as always hoping and praying for good numbers!

Not So Great

Well, there are good days and bad days on this cancer rollercoaster and today was a not so great day.

Ben has been pretty upset by the fact that he is neutropenic again and not able to go to school but has been doing his best to keep a good attitude. He is very cute, every morning after he wakes up he makes a list of the things he would like to do. For example, "(1) color pictures, (2) watch a program and snuggle with Mommy while eating popcorn, (3) eat a salty pretzel."

In addition to the emotional issues, the many medications he is on really take a toll on him. Some make him hungry while others make his tummy very upset when he eats. He has terrible heartburn plus he is constipated due to one of the chemo drugs he received on Wednesday. We thought that he might have a urinary tract infection because he feels like he needs to go to the bathroom constantly so we took a trip over to the hospital today. Thankfully he doesn't. He was worried that there would be yet another medication to take. Not only does he need the "normal" medications but he needs a whole bunch just to counteract the side effects from those medications!

Ben went to bed at about 5:30 tonight so I am hoping that he is able to sleep through the night and that the extra sleep will make him feel a little better. Meanwhile, I am trying to give David a little extra attention as this phase has been tough on him as well.

On the bright side, we received a wonderful gift basket from a friend from school today that made both boys smile from ear to ear. It was stocked with toys, games, clothes, snacks and Ratatouille (the boys had really wanted to see this over the summer but Ben wasn't well enough to go to the movie theater). We all snuggled together and watched the movie after we picked David up from school and had a great time.

House Bound

We went to the hospital for Vincristine and Doxorubicine again today. Unfortunately, Ben's white blood count (ANC) was down dramatically. Last week this number was up over 6000 but it is down to just over 200 today. This means that Ben is neutropenic again. The food restrictions are back in place and he is now on antibiotics.

The worst part is that this means that Ben needs to stay home from school for awhile. He was just devastated by this news. The expectation is that his numbers will be down for at least a couple of weeks. The schedule I previously outlined may be altered in that the second half of Delayed Intensification cannot be started until his ANC is back up again so we will just have to wait and see when things can start up again. The good news is that he is only on the steroids and antibiotics for now (although he just hates the taste of the antibiotics so there may be some bribery happening over the next few days) and he will get a break from the chemo until his numbers improve.

I think we will be taking things day by day for awhile.

All Still Quiet

I haven't had much to write about recently. Ben has been feeling pretty good with the exception of the side effects from the steroids. He had fun going to a hockey game with Scott over the weekend. We had plans to go to a movie screening on Sunday but unfortunately he wasn't feeling well enough to go. Some of these medicines really make his tummy upset.

We go in for more chemo on Wednesday so I will report on how it goes and what his numbers look like. As long as his numbers are good he can continue to go to school so we are really hoping the chemo hasn't hit him too hard yet.

Halloween

Ben was able to enjoy all the festivities of Halloween!

The boys started off with a carnival at their school and then participated in a fun parade for all the parents to watch. After a quick pizza lunch we went over to the Infusion Center for his Vincristine and Doxorubicin. Everyone at the hospital was amazing as usual. The boys received goody bags full of fun toys and crafts and then Joanne brought over some great pumpkin decorating projects for them to work on to pass the time while Ben was receiving his medicine and hydration.

We all got dressed up (me included!) in our Star Wars costumes and went over to our friend's house around the corner. Many friends from the neighborhood met us there so we had a nice big group, I think there were about 11 or 12 kids, for the fun night of trick or treating. Ben was worried that he wouldn't last very long but he did great. He started to get very tired so I let everyone know that I thought we might break off from the group and head home...but as it turned out most of the kids were really tired so we all headed back.

Ben was exhausted this morning. I told him it was fine for him to stay home and rest today but he didn't want to miss school. I think tonight we will go to sleep early!

Oh, I almost forgot...Ben's numbers were great yesterday! He doesn't need to go the hospital until next week!!! I need to watch him closely to make sure he doesn't start to look pale or feel really tired as that might mean he will need a blood product transfusion...but if he feels good he gets some time off!

Ben is AMAZING!

Ben had the dreaded leg injections today...and didn't even cry. I couldn't believe it!!! He was extremely calm and brave. He is exhausted and his legs hurt tonight but he is so relieved that the PEG injections are done. We had a little celebration that there won't be anymore. His nurse at the Infusion Center was terrific and brought him lots of candy after the great job that he did - everyone was so impressed.

Thank you Poppy and Uncle Chris for coming over to eat lunch and hanging out with us to help keep Ben distracted and calm.

Ben gets the day off tomorrow but will need to go for a chemo treatment on Wednesday. We are going to the hospital right after the Halloween Parade at school so that he can hopefully have a little quiet time to rest up for trick or treating.

Update

Ben woke up feeling great today! He was able to go to school and picked out many fun books at the Book Fair.

First Day of DI Complete

Ben had a tough day but he is sleeping now. We went straight to the hospital after dropping David off at school this morning. After going through the wonderful admissions process :) he then had to have blood drawn to make sure that all was okay for the busy morning of procedures.

Ben had an IV put in which was particularly painful today. He then had a spinal tap, a new PICC line put in, was given Vincristine and Doxorubicin and had more blood taken for additional tests. It took awhile for him to fully wake up from the drugs but was a good sport about everything as usual. His first request was for the candy dispensing machine full of candy corn that Grammy and Poppy brought for him. The drugs seem to be taking their toll on his tummy so was not feeling well and wanted to try to go to sleep early tonight. We are hoping that when he receives the chemo next Wednesday that it won't be quite as bad so that he can have a normal Halloween night.

Ben is upset about the fact that he needs a PICC line again. He knows that it is a good thing considering all the transfusions and blood draws that need to be done over the next 2 months, but he was really enjoying "feeling like a normal kid" for the past few weeks. The good thing is that this should be the last difficult phase and after we make it through this he will be in the Maintenance Phase for the next 3+ years. Bummer that it takes so long...but is so much less intense than the last 6 months...and no PICC line!

The steroids have also started today so hopefully they won't make him too moody this time around. He is really looking forward to the Book Fair at school tomorrow so we are hopeful he feels well in the morning. He recently jumped up to reading chapter books so he is excited to pick out some new books to read.

I guess I should try to go to bed. Ben talked me into letting him sleep in bed with me so that he can get extra snuggles tonight to help him feel better. Of course David couldn't be left out so now it is Mommy, two boys and three cats! We will all have sweet dreams together (especially now that we found out that Daddy gets to come home tomorrow from his trial!)

Thanks, Grandmom!

My mom, Helen Freedman, recently finished her Light the Night project to raise money for the Leukemia and Lymphoma Society. Thanks to everyone who donated, and especially to Ben and David's Grandmom for working so hard to raise money for this great cause!

Grandmom has now moved on to helping me with the silent auction for the Cedars-Sinai annual dinner. She's already lined up five travel packages to resorts in Arizona and Puerto Rico! If anyone wants an invitation to this dinner, which is on November 15 in LA, let me know. Tickets start at ONLY $500. :)

Delayed Intensification Overview

We are coming to the end of the Interim Maintenance phase of treatment and we have really enjoyed the break. Starting next week the Delayed Intensification (DI) phase will begin. Ben has already received most of the drugs in earlier phases of his treatment so we are familiar with the side effects but there are a couple of new ones.

The schedule will be as follows:

Dexamethasone (by pill) days 1-21. This is the steroid Ben has taken in the previous phases so we expect him to get his round face and belly again. Unfortunately, this drug is the toughest on him emotionally because it causes huge mood swings. He goes from being happy to angry to sad in the matter of seconds. It is pretty difficult for him.

Vincristine (via PICC line) days 1, 8 and 15. This drug is pretty tough on his tummy but thankfully they give him Zofran to combat this so it is usually pretty mild.

Doxorubicin (via PICC line) days 1, 8 and 15. This is a new drug. Doxorubicin is a type of antibiotic that is only used in cancer chemotherapy. It slows or stops the growth of cancer cells in your body. Common side effects include low blood counts, nausea and hair loss. We will find out next week how Ben will react.

PEG Asparaginase (via needle in leg muscle) day 6. This is what we refer to as the dreaded leg injections. Of all the medications this is the one that keeps Ben awake at night with worry.

Cyclophosphamide (via PICC line) day 29. This is the mustard gas derivative that Scott described a few months ago. They need to give lots of hydration before and after (about 6-8 hours worth) to protect his kidneys so this will be a long day at the hospital, but thankfully doesn't cause Ben any discomfort.

Thioguanine (by pill) days 29-42. This is a new drug. Thioguanine belongs to a class of medications known as antimetabolites. It resembles a normal cell nutrient needed by cancer cells to grow. The cancer cells take up thioguanine, which then interferes with their growth. Common side effects are low blood counts and nausea.

Cytarabine (aka ARA-C) (via PICC line) days 29-32 and 36-39. Ben doesn't mind this because it just means we hang out at the Infusion Center for a few hours...although the fact that we will need to do this on Thanksgiving is not so great! This (and the cyclophosphamide) are the ones that really impacted his blood counts over the summer and caused the daily trips to the hospital for prophylactic antibiotics.

Methotrexate (via spinal tap) days 1 and 29. Ben is a pro at these now so shouldn't be a problem.

We are hoping that there won't be any big blood count drops at the beginning of this phase so Ben can continue to go to school for a little longer but we will wait and see. The PICC line will be put back in next week so at least blood draws will not cause him any pain.

OK, who wants to help?

Cedars-Sinai has a silent auction every year to raise money for the hospital, including the Cancer Institute. Nicole and I are going to help with the silent auction as part of our involvement with the Board of Governors.

So, are you going to help?

My Mom, Helen Freedman, already is working hard on soliciting donations for the silent auction through her contacts in the travel industry. If you can help with a donation for the silent auction, or if you are interested in attending the event on November 15, please let us know by posting a comment or e-mailing one of us directly. Thanks for your support!

More Good Numbers

We went to the hospital today for a check-up and blood draw. Ben's numbers look very good and the doctors were happy with the exam. We get the next TWO WEEKS OFF from the hospital!!!! Ben is very excited! (Although I must say that the boys had a lot of fun there today. Everyone treats them like superstars and they had everyone laughing the whole time with their silliness.)

When we go back in 2 weeks it will be for the start of the next phase (Delayed Intensification). I will give a full overview of that phase soon. Ben will have a new PICC line put in and the tougher chemo regimen will begin again. There will be some new drugs in this next phase so we are not sure yet how he will react to them.

For now, we are just going to try to keep everyone healthy and continue to enjoy the break!

Hair loss

Ben's hair is really starting to fall out now. He still has hair all over his head, but it is getting really thin -- you can see his scalp without any problem. Although Uncle Chris already shaved his head to show solidarity, I am holding off until more comes out. That's primarily because I am in the middle of a long trial, and I think the jury might freak out if I showed up bald all of a sudden. :)

Ben and David are doing really well. Yesterday, we went to buy toys with the gift cards one of my former colleagues sent them. They got all Star Wars stuff -- it's the current obsession. LOL

Anyway, thanks to all of you for continuing to follow the blog. It is hard to believe that we're only five months into this, and that we still have more than three years to go. The continued support really means a lot.

Two Sick Boys

Things are pretty much the same here, except now there are two sick boys! They both have a cough and runny nose but still no fevers so we are hoping everyone will feel better by tomorrow.

Cold

Ben is home sick today with a cough and stuffy nose. The good news is that he does not have a fever so we are HOME - much better than the hospital. If he gets any worse I will need to bring him over to the hospital so the doctor can check him out and likely get him on some medications, but for now we are relaxing, reading, snuggling and of course playing video games!

The only other interesting news around here is that he lost another tooth yesterday and made some good money from the tooth fairy. He looks very cute with his two top front teeth missing!

Spinal

Another spinal tap down!!
All went well today. Everyone (nurses and doctors) always comment on how well behaved and cooperative Ben is during all the procedures. Everyone is always amazed at how mature he is for a 7-year old!
Ben had an IV put in, blood drawn, a spinal tap and vincristine (chemo) today. All went well and we had the wonderful news that his blood looks really good. As we were hoping, this has been the nice and easy phase they were expecting. A nice little break before the next phase starts (later in October). We also received the wonderful news that there was a typo in the information we received about the next phase and it looks like he will NOT have to receive a spinal tap on Halloween as we previously thought!!
Ben is in great spirits and feeling great (he was very happy to have his Poppy there during the procedure today). We will continue to report on all developments!

(p.s. Thank you Marlene for the awesome dinner and delicious cupcakes!)

Great Weekend!

We have had a very fun few days! Friday was the first field trip for the boys and I was able to tag along as a chaperone for Ben's class. We went to the park and had a wonderful time playing games, playing on the jungle gym and having a picnic. A beautiful day of playing outside with lots of friends!

The biggest treat of the day was Scott's return from trial. The boys were so excited and had a lot of fun playing until way past normal bedtimes. David wanted to have a celebratory dinner for Daddy's return. His pick was ribs. Scott and I sat there amazed as David polished off a whole rack without a problem - that boy can eat!

Ben has the class mascot for the weekend so we went out and about for an "army day" on Saturday looking at army trucks and artillery and other such stuff (I'm sure the boys will be upset I don't remember the actual names of everything!) We took lots of pictures so Ben can complete his Buster Bunny book to share with his class on Monday.

Today has been fantastic with a great visit from family. The boys had a great time playing with their cousins...oh yeah, and then the cutting of their uncle's hair! Although Ben has not lost all of his hair yet he has been continuously pleading with his Uncle Chris to shave his head early. His uncle just couldn't say no any longer and brought over the hair trimmers as Ben asked. Ben and David were amused by the new hairstyle they gave him but I don't think his wife and girls quite liked it (but it should look normal again very soon so I think everyone will survive)!

Some News

I came home today to find a letter indicating that I have been appointed to the Board of Governors of Cedars. This will allow Nicole and me to participate more actively in fundraising for the hospital, the Cancer Institute and the cancer research done there.

We are going to focus our efforts in large part on the Pediatric Hematology-Oncology Fund, including by directing that our own contributions be allocated there. So let me start by asking all of you to donate whatever you can, however nominal, to this fund. The link is in the right margin.

And if you forget, don't worry, we will be covering this material again. :)

Swimming

All is still going well here. The boys are having fun at school and yesterday we decided to take advantage of having the PICC line out by going over for a swimming lesson. The swim school has been AMAZING and has been so supportive - they have kept the boys lesson times available to us even though Ben hasn't had a lesson since April and David has only gone sporadically through all of this!

Ben was a little nervous he would get too tired but he ended up having so much fun! He did work on his backstroke...but he also spent a lot of time on the slide and diving board along with David (who had a blast as usual!)

Still Great!

Ben is still feeling great and having a wonderful time at school. He had a check-up yesterday and a blood draw without the PICC line so had to have it done the old fashioned way. Although he was very nervous, he was also very brave and all went smoothly. Best of all, Ben's blood looks great and should have a week off until his spinal tap and chemo next week. There was talk about possibly putting in a new PICC line next week as he will be out for the spinal but after further review it looks like he won't need the new one until about mid-October when he starts the next phase of treatment (Delayed Intensification). It will be nice to have the line out for a couple of more weeks - just makes life a little easier. We will take what we can get!
Sorry for the lack of posts lately, I have been a bit under the weather so have been trying to rest as much as possible to get better quickly. I am hoping that the next few weeks we will just be posting about normal things like going to school and playing with friends. We will get back to the serious stuff in October.

Beach Day!

We just had a fantastic day at the beach. When I saw that the boys had the day off of school today I asked Ben what he would like to do. I told him it could be anything and suggested that he think about what he missed doing this summer, he immediately asked "can we go to the beach and then have dinner at Islands?" I said absolutely and David was thrilled with the plans as well.

When we arrived at the beach this morning Ben spotted three dolphins swimming very close to the shore - the boys were so excited. Soon a bunch of friends joined us and the boys had fun digging in the sand, playing in the waves and boogie boarding. Another highlight was catching sand crabs. Thankfully I was able to convince them that we shouldn't bring them home with us because they would be much happier staying at the beach. I didn't know how long Ben would want to stay but he was having so much fun we ended up staying all day and were even able to go to Islands after we got cleaned up.

This is such a wonderful break from the tough summer. Ben is having a great time feeling like a "normal kid" again.

So Ben, how was school today?

"Fantastic!"

Go, Ms. Thomas, go!!!

Kasey Thomas, one of the teachers at Ben's school, is competing in the Nautica Malibu Triathalon this weekend to raise money for the Leukemia and Lymphoma Society. The race is on Sunday, September 16 if you want to come out and support her!

And if you haven't already, please check out Ms. Thomas's Team-in-Training page, where you can get more information and make a donation.

Thanks, Ms. Thomas!

(Note to the Internet-challenged: If you click on the underlined words, you'll be taken to other places with more information!)

Quote of the Day

Ben yesterday, with a giant smile on his face:

"I feel like a normal kid again!"

Bye, bye PICC line!

Today is Ben's last day on the antibiotic pump. After school, he'll go to the hospital, return the pump, and have the PICC line removed. He's excited because he gets to help pull it out!

Losing the PICC line will be great because Ben will be able to bathe and swim like a normal kid -- no more wrapping his arm in Saran wrap so he can take a bath or shower. But when they need to draw blood, they'll have to do it the old fashioned way. That will suck, but he'll get used to it, we hope.

I have a long trial starting on the East Coast soon, so I'm going to be gone a lot. Out for a week, back for a couple of days, gone for another week, then home for a week, then gone again, etc. Hard to predict the exact schedule, and it's tough when it takes all day to get home. But we have telephones and a webcam, so hopefully all will be OK. Nicole has lots of support, so that's good. Thanks to all of you who will be helping her out while I'm gone!

Great Day!

The boys woke up early because they were so excited to start school and raced through breakfast because they wanted to get there early. I told them that we could go a little bit early but not go too crazy on the first day (I was a little nervous about Ben's stamina). They eagerly jumped out of the car when we got to the school and I barely got a wave as they ran in. I, of course, was a nervous wreck!

I was first in line at the pick-up looking anxiously as the clock slowly ticked away. When they were finally brought out and put in the car I asked them how the first day was and they both yelled "FANTASTIC"! They love their teachers and their friends and had so much fun! Ben said he didn't get tired the whole day and David said he didn't get into too much trouble. :)
Ben said he was asked alot of questions about his PICC line and about the pump but he was happy to explain everything.

We had our daily hospital visit immediately after school and although Ben's hemoglobin is a little low and his white blood count is now too high the doctors and nurses are not concerned. This is a normal side effect of two of the drugs he is currently taking. We will go in for another antibiotic refill tomorrow but then the PICC line comes out on Friday. We should have 6 weeks off. Blood draws will certainly be more difficult but he shouldn't need that many during this phase. They will put in a nice new PICC in October when he starts the next phase of treatment.

The boys have already had ice cream sundaes to celebrate their first day and have already finished with their homework so we will be having a nice relaxing evening.

School!

Ben and David started school today. Ben wore his antibiotic pump around his neck and kept a container of Purell in his pocket. It will be interesting to see how this goes. He should be done with the pump on Friday, and I think they'll remove his PICC line then.

LA Times on Urgent Need for Blood

http://www.latimes.com/news/local/la-me-blood2sep02,0,7158358.story?coll=la-home-center

Blood shortage grows serious

By Mary Engel, Los Angeles Times Staff Writer September 2, 2007

In the blood business, Labor Day is the last hurdle of the donor-dry summer. Soon, college and corporate blood drives will get underway to replenish reserves. All that's needed is to get through the holiday weekend with no chain-reaction freeway crashes or major train wrecks.

But a dwindling pool of donors nationwide could turn today's seasonal shortages into a year-round drought, blood experts say. And Southern California would be hit especially hard. On average, just 5% of U.S. adults donate blood; here, it's fewer than 3%.

The American Red Cross Blood Services of Southern California needs 1,500 units of blood every day to supply more than 150 hospitals in Los Angeles, Orange, San Diego and Ventura counties. Already it must import 40% of that from the Midwest and rural areas in other parts of the country. An earthquake or bridge collapse could easily triple the organization's needs.

"The general public presumes that nobody's going to bleed to death because there's not enough blood," said Dr. Jeffrey McCullough, a professor of laboratory medicine at the University of Minnesota and an expert on the nation's blood supply.

But getting donors, he said, "is more and more difficult, and the reforms make it more and more expensive." An average adult has about 10 pints of blood, and a major trauma victim can need up to 100.

Generally, the public's concern is blood safety, not supply. That's been the case since the 1980s, when HIV-tainted blood infected more than 12,000 patients nationwide through transfusions.Today a battery of tests screen blood for HIV, hepatitis, West Nile virus and other pathogens. A series of questions excludes donors who have visited countries with malaria or mad cow disease.Temporary restrictions on everything from travel to tattoos often end up deterring donors permanently. A study by McCullough in the July issue of the journal Transfusion concluded that 37% of the U.S. population is now eligible to give blood, down from an estimated 60% in the 1990s.

"The blood supply is extraordinarily safe," said Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania and a former member of a federal advisory committee on blood safety. "But you have to remember that having blood available is part of safety, too, particularly if you have some kind of disaster and you need a lot."

The blood-bank system that people take for granted began during World War II as a way for citizens to help wounded soldiers on the front lines. Dr. Charles R. Drew -- for whom the medical school south of Watts was named -- discovered how to preserve and store blood and organized the first blood drive. Neither subsequent generations nor immigrants have embraced the donor habit as enthusiastically as the war generation.

"We don't have a blood supply problem, we have a blood donor problem," said Teresa Solorio, spokeswoman for American Red Cross Blood Services of Southern California. "It's easier to get people to donate money than to donate blood."

Meanwhile, even with the development of blood-conserving surgeries, the need for blood has risen because of medical advances and an aging population that needs hip replacements, heart surgery, cancer treatment and kidney transplants."

As the baby boomers are getting older, they're going to be needing more medical procedures," said Dr. Ross M. Herron, the regional Red Cross center's chief medical director. "And it's going to fall to the Gen Xers and the millennial generation, just like Medicare and Social Security and everything else."

Type O blood

Blood shortages occur in pockets across the nation, especially in Los Angeles, New York and other large metropolitan areas, which tend to be faster-paced and have less of a sense of communitythan parts of the Midwest and South, blood experts say. But natural disasters, for example the recent floods in Oklahoma, can mean less blood from states that usually have enough to export.

Recruiting new donors is even more urgent in Southern California because of its Latino population, whose blood type doesn't always match that of Mid- western imports or even local donors.Blood type, like eye color, is inherited. About 45% of whites have type O blood; an estimated 65% of Latinos have it. People with type O blood can receive only type O, and demand is growing as the Latino population grows.

Adding to the demand is the key role type O blood plays in emergencies: It alone can be transfused into patients with any of the four basic blood types -- A, B, AB or O -- without causing serious, even fatal, complications. This universality makes it crucial to have a supply for trauma patients who could bleed to death in the 20 minutes it takes to test and match blood.

A majority of blood donors in Southern California -- 57% -- are non-Latino whites, according to Red Cross figures; 23% are Latino.The local Red Cross is targeting Latinos in an effort to "make our donor population match our patient population," Herron said.But because blood donors must present photo identification, potential donors who are in the United States illegally often fear detection, said Dr. Alexander J. Indrikovs, an associate professor of pathology at the University of Texas Medical Branch in Galveston.Other barriers to increasing blood donations among Latinos are cultural."

Many of us come to the U.S. with a culture that is not a culture of donating blood," said Indrikovs, who is originally from the Dominican Republic. "We see it as necessary only when a family member needs blood."Until that changes, Indrikovs said, "we are going to be seeing increasing shortages."

Family donations used to be more of a tradition in the United States when hospitals charged a "replacement fee" for transfused blood and families and friends of patients could pay it off by giving blood. Changing insurance and billing practices did away with that fee.

Today, the two nonprofit groups that supply most of the nation's blood -- the American Red Cross and America's Blood Centers -- rely heavily on college and corporate blood drives and on regular donors who give more than once a year. Families that host blood drives tend to do so because their personal experience has shown them how vital it is to have blood available when it's needed.

But in Mexico and many other Latin American countries, Indrikovs said, it is far more common to sell blood than to donate it. In the United States, only plasma, the fluid part of blood, can be sold, and it is used in making some blood products. By law, only donated blood can be used in transfusions. Health officials believe that payment can motivate people to lie on questionnaires meant to screen out drug use and other health risks.

The donation rate in many Latin American countries, Indrikovs said, is less than 1%.Changes urged The Bioethics Center's Caplan argues that blood banks nationwide need to streamline questionnaires, especially for repeat donors, keep longer hours and make the process more inviting for all donors."

We haven't made blood donation as painless, as simple and as rewarding as it should be," he said.

For now, blood banks and hospitals juggle supplies and pray they get through holidays. So far, no hospital has run out of blood. But nationwide, 135 hospitals reported canceling elective surgeries on one or more days because of blood shortages in 2004, the most recent year for which statistics are available. That year, just 4.5% more blood was available for transfusions than was used, the smallest margin ever measured.

Blood suppliers aim to have a three- to five-day supply on hand to distribute to hospitals in case of emergencies. As of Friday, American Red Cross Blood Services of Southern California was down to about a 6-hour supply, or 217 units of O positive blood and 35 units of O negative, the most versatile of all.

Lots of Medicine

We are still home and just making our daily trips to the Cancer Center for antibiotic refills and blood tests. Ben has been a little grumpy and tired lately, but you can't really blame him considering how tough the past few weeks have been. He has been put through a lot. We were also told that the steroids can cause mood swings - thank goodness he only needs to take them 5 days a month - we don't want any roid rage incidents! :)

He needs to take quite a bit of medicine orally during this phase so he is not too happy about that but I think we have a good system down so far and he is being a good sport. After we get through the antibiotics over the next week this phase should be pretty easy as long as he doesn't get any infections or fevers. Ben told me he wants to carry Purell in his pocket to school and will be careful not to hang out with anyone with a runny nose!

If all goes as planned he will only need the antibiotic pump until Friday and then it will come off and the PICC line will come out. Ben is still nervous about the actual removal of the PICC line but I know he will be happy to have it out for a few weeks.

We did our back to school shopping so now the boys are totally ready with backpacks, lunchboxes and clothes. They even have their homework done and ready to turn in so we are just hoping there are no surprises between now and Wednesday!

(Kitten update: Shaggy (or Shag Master S as David calls him) was given the all clear yesterday and is totally healthy. Now we just need to try to stop him from stealing all the food from the other cats - he has almost doubled his weight in the past few weeks! He has certainly been a fun new addition to the family!)

We are home!!

We are home and so happy to be here! Ben was very excited to have two of the cats greet us at the door (Zorro and Shaggy) and now we are anxiously awaiting David's return from Grammy and Poppy's house!

We will need to go to the Infusion Center every day to restock the antibiotic pump and so they can check his blood to make sure all is well. Ben starts the next phase of treatment tomorrow so he will be receiving a chemo drug (Vincristine) - but he has had it many times before and if we take the anti-nausea drug it doesn't have too bad of an impact on him (and even when he has a bad reaction it usually passes in about 12-24 hours). He will need the pump for about 10 days but then at the end of next week they will finish the antibiotics and take out the current PICC line. Ben will be free of it for about 6 weeks so baths and showers will be much easier and I believe he will even be able to swim (I need to check for certain tomorrow with the doctor).
He will be taking other medications during this next phase but most of them are oral so hopefully won't be too bad. We will see whether there will be any new enticements offered by Scott make him take the medicine!

The best news is that as of now Ben is scheduled to start school next week with everyone else!!! He is so excited! We plan on doing some shopping for a new lunch box and clothes. He even gets to go use the gift certificates he received for his birthday. He hasn't been able to go into any stores for weeks because he has been neutropenic for so long but now that his numbers are up we will be doing some major shopping!

CORRECTION!

LOL, we should start getting used to the 180s.

They are not removing the PICC line. There was a lab error -- the infection is gone. So Ben is going home TODAY!

He'll continue to get antibiotics through his PICC line using the pump. When the course of treatment is over (I think in like a week or ten days or something like that), they will remove the PICC line because he won't really need it during the next phase of chemo, which will start soon.

Thanks to everyone for the kind messages, good thoughts and prayers. Ben can't wait to come home!

PICC Exchange

They are removing Ben's PICC line today. Apparently it is a pretty simple process -- you just pull it out. Takes like two seconds.

Ben is really upset about it. He's going to get an IV, and he hates being stuck. He'll then stay in the hospital, getting antibiotics through the IV to kill off the infection that was in the old PICC line. On Friday, when the infection should be gone, he'll get a new PICC line and be sent home. Assuming all goes as planned, of course.

The good news is that Ben should be able to start school with the rest of his class next week. (Keep those fingers crossed for him!)

Good news and bad

Ben is still in the hospital. I stayed with him again last night for work scheduling reasons; Nicole is there now and she'll stay tonight.

The good news is that Ben's counts have improved considerably. He is no longer neutropenic (or at least he wasn't last time I heard), but he has a bad infection in his PICC line. The doctors are seriously considering taking it out (it has been in for more than 4 months now), which would help get the infection under control. The problem is that Ben would then need to be stuck every time they have to draw blood, which is often daily (more frequently when he is in the hospital). Even with an IV in the hospital, they often have trouble drawing blood and have to stick him. So we'd like them to put a new PICC line in, but that may not be possible right away since he has the infection.

We'll try to keep everyone posted. No clue when we'll be discharged.

Saturday Night at Cedars!

Ben and I are in his room taking turns catching fish on his PSP. I can't think of a better way to spend a Saturday night. In fact, we were explaining to our nurse that the Pediatric floor at Cedars is just another vacation home for us, sort of like our time share. Great place to hang out and relax. And we like the food. :)

Hospital Update

We spent the night in the infusion center. Ben received two different types of antibiotics and we were hopeful that they were working as his temperature went down in the middle of the night. Unfortunately, it went back up to 101 by about 7:00. Also, the blood work came back and Ben has a bacterial infection so he will be admitted to the Pediatric floor even if his temperature stays back down. We have not been given any predictions on how long he will need to stay but we are really hoping it won't be for very long this time!

On the positive side, we received a report on Ben's bloodwork this morning and his numbers look good! For the moment, he is not neutropenic. We are excited - maybe now we can go to some stores for some back to school shopping after he is released from the hospital!

Hospital update

Ben's fever is over 102, so he is being admitted. Nicole will spend the night with him.

Another fever . . .

Ben has a fever again, so Nicole has taken him to the hospital. They probably will be in the Infusion Center overnight. If the fever doesn't come down, he'll have to be admitted. Ugh!

Numbers continue to climb

We are back from the hospital and we keep getting good news (nice change from the past month or so). Although the numbers are not high enough to start the next phase of treatment they continue to go up. Ben is still neutropenic so all the precautions are still in place but we are optimistic that he may be out of the "danger levels" and off the neutropenic precautions by Monday...who knows maybe will even be high enough to start the next stage.

This week has been a bit of a challenge because David and I have been fighting colds. It can be a little complicated taking care of two boys when one is sick and the other one cannot be exposed to any type of germs - and of course all they want to do is play together! We have used a lot of Lysol and Purell in this house over the past few days. Even more than usual...and that is saying a lot!

So many good people . . .

Nicole and I continue to be amazed by how many wonderful and giving people there are in this world. We want to catalog all of the wonderful things people have done for us, but there have been so many that it's tough. A few recent examples:

* One of my out-of-state clients is in LA on business this week. She has many commitments, I am sure, but she is spending a good part of one of her days here going to Cedars to donate her A- blood for Ben. THANK YOU!

* A fireman in Ventura County who we have never met keeps sending things to Ben and David, complete with cool "fireman" letters. Today they got Dodgers bobbleheads, Ventura Fire Department baseball caps with his station number on the front and their full names on the back, and uniform patches! THANK YOU!

* Good friends of ours helped out with Ben's birthday party by picking up items we needed for the party and coming early and staying late to help with set-up and clean-up. THANK YOU!

* A good friend who has been following the blog saw that it was Ben's birthday recently and stuffed our mailbox with a PSP game for him -- coincidentally the one he's been asking for. THANK YOU!

* A special operations soldier in Pennsylvania who we have never met keeps sending unit patches, posters and other items to both Ben and David. THANK YOU!

* Family members have been working overtime to help us out in a million different ways. THANK YOU!

* People at my office and a different group of people at the hospital got together and gave Ben and David backpacks full of toys, school supplies and other goodies. THANK YOU!

* Many people have been making donations to the charities in the right margin. THANK YOU!

We undoubtedly are forgetting people, but we want to thank everyone. You are all AWESOME! THANK YOU!

Marathons are tiring . . .

Although we're past the initial shock and fear of Ben's cancer, every once in a while we remember how long this is going to take. Still another 3-4 years to go.

It really is draining. Ben often does not want to take his medicine, he gets grumpy and tired from the side effects of the medicine, and he gets frustrated with the limits on what he is allowed to do. Right now, while he doesn't have to go to the hospital for a few days, he is still neutropenic (i.e., his white blood cell count is so low that we have to take special precautions against germs), so there are a lot of things he'd like to do but can't. Like go to a restaurant, or a store, or play with a large group of other kids. I wish he didn't have to deal with all of this. And frankly it is no fun for Nicole, David and me either.

We are expecting Ben to be able to go back to school in September, but that assumes his counts come up. They are slowly climbing, but I have to admit I am a bit concerned about it. :(

Finally!

Well the numbers haven't gone through the roof...but at least they are going in the right direction now. Slowly but surely!! Ben received a hemoglobin transfusion Sunday night and it really gave him a boost. The number is still below what we would like but not in that terribly low level it couldn't seem to get out of last week. Also, his platelets are doing great!
He continues to be on the antibiotic pump and receive antibiotics at the hospital every day (this is due to his very low white blood count)...but they think they may be able to stop soon if the numbers continue to creep up. We are just so happy that he hasn't needed another transfusion in a few days.

The doctor still says that if we can get his white blood count up that he will be able to start school in September as long as he has the energy. If things stay on track he will be able to keep a pretty regular school schedule until about mid-October when the next intense phase begins. We are looking forward to a break from the hospital and some normal days!!
We are all smiles over here! :)

Great party! But . . .

The birthday party went very well. We reserved the picnic tables at a local park, brought in a gigantic "bouncy" (one of those giant blow-up things the kids jump up and down in -- this one also had a humongous slide), and hired two actors to come in fatigues and put the kids through "boot camp." One of the actors was "Captain Sillypants" -- they were hysterical and the kids all had a great time.

When the party was over, we invited some family members back to the house, but Ben and I had to go to the hospital for antibiotics, so we missed that. His hemoglobin was really low, so they told us to go home until his blood is ready, then come back for a transfusion. Nicole and Ben will go back shortly. Nicole is worried that they may need to spend the night, but hopefully they'll be able to come home. Meanwhile, David and I will wreak havoc while Mommy is away. We do that when there is no adult supervision. :)

Saturday Report

Ben and I just returned from the Infusion Center. He got antibiotics and also got hooked up to a pump to get antibiotics for the next 24 hours. Nicole was concerned about the pump because Ben's birthday party is tomorrow and it would interfere with his ability to participate in the festivities. But the nurses told me we can disconnect it before the party, so that's good.

I was very happy to get a couple of letters from Cedars today indicating that a couple of my partners recently made donations to the Pediatric Hematology-Oncology Program in Ben's honor. Thanks to both of you! The money really will help some needy kids. If anyone else wants to make donations, there are links to several good charities (including Cedars) in the right margin.

And thanks to everyone for your continued thoughts and prayers. We continue to receive nice e-mails from people, and they do lift our spirits.

Patience

Ben's numbers are still extremely low. He received a platelet transfusion yesterday and hemoglobin today in addition to the antibiotics. He is totally exhausted (not surprising considering the low hemoglobin number) and frustrated that we are still having to go to the hospital on a daily basis. His white blood count is also very very low (I think the report lists it as "panic level"). As we have said before, this is all a normal side effect of the chemo but during this time he is very susceptible to infections so we continue with the food restrictions and our war against germs and bacteria!

We are doing our best to be patient because we know that at some point the numbers will go up!

Will the numbers ever get higher???

All is going well here...except for the fact that Ben's numbers are still being stubborn. We were hoping that last week and this week were going to be easy but instead we are at the hospital every single day!!! The doctor told us to schedule appointments for the remainder of the week. They expect Ben will need the antibiotics as well as other blood products this week. As soon as his numbers start coming up and they take him off the antibiotics I think we are going to have to have a celebration.
I love all the people at the infusion center - they are absolutely wonderful to us - but we would LOVE a day off!!!

Kojak is Coming!

Ben's hair is really starting to come out. It comes out very slowly, just a little clump at a time. But it is definitely coming. So those of you who will be shaving your heads, get ready!

Ben is still getting daily IV antibiotics because his numbers remain low. No transfusion today, so that's good, I guess. We are having a little BBQ today -- I am grilling baby-back ribs.

The Playroom, Part I

I got permission to post photographs of the playroom a long time ago, but forgot to do it. This is the little room at the Cancer Institute where kids can go while waiting for appointments, lab results, etc. Especially when you first start going in for treatment, this room is really invaluable. The Cancer Institute is a pretty scary place until you get used to it, and the playroom is a wonderful way to escape the reality of the hospital and get through the day.

The playroom and other things like it are funded by the Pediatric Hematology-Oncology Fund at Cedars. This is the primary cancer charity we have chosen to support. If you would like to join us in helping kids with cancer who are being treated at Cedars, you can click the link in the right margin. Be sure to specify the account number so your donation goes to the right place.

I also took pictures of some artwork in the playroom that I think is pretty special. I'm hoping to get some of you guys all choked up so you'll pull out those checkbooks and credit cards. :)

I put the photos the next (technically, the last) post so you'll see this text before the pictures.

The Playroom, Part II

Here they are!

Calm Day

Well I think I have stopped shaking from yesterday's injections! Today was much easier. We had to go to the Cancer Center but only to check Ben's numbers and so he could receive his antibiotic transfusion.

Unfortunately, his numbers are down again so in addition to continuing on with the antibiotics tomorrow he will also be receiving a platelet transfusion. Ben is kind of bummed as he was really hoping to avoid the hospital on his birthday but we are going to make the best of it. As we have learned, there is no reason you can't have fun just because you are at the hospital!

All Done

We ended up being there until 5 pm. The PEG injections were no fun -- we had to hold him down again while he screamed. But afterwards, he decided they were not so bad and told his brother it was no big deal. LOL

We are home now.

Big Day

We are in the Infusion Center, where Ben is getting lots of stuff. He's getting antibiotics and fluid intravenously right now. He's also got some numbing cream on his thighs to prepare him for his PEG-Asparaginase shots, which he'll get a little later. Before the shots, he'll get some plasma and Vincristine. He'll also get some Atavan, a mild tranquilizer, to make the shots easier.

Ben is feeling OK about the shots, in part because his cousin Kyle (on my side of the family, not the one in Michigan) gets shots every day to treat his diabetes. If Kyle can handle shots every day, then Ben can handle these. (We did not discuss that these shots are higher volume with bigger needles than insulin, but that's not really the point!). Also, he's getting some birthday presents early as a reward.

We'll try to report in later, but things are going OK so far. Thanks to everyone for checking in and following Ben's progress.

Infusions

Well, Ben's numbers continue to be very low so he is still neutropenic. Also, his platelets were low yesterday so needed a platelet transfusion and today his hemoglobin level was extremely low so needed a transfusion today as well. Fortunately he slept for most of the transfusion today so David and I just hung out playing video games for 6 hours (I don't know how I would keep them entertained for these long stretches without the FunCenter and PSP!!).

The low numbers are to be expected due to all of the chemo he received the previous two weeks so this is nothing to be concerned about. He will continue to receive antibiotics daily at the infusion center until he is no longer neutropenic and tomorrow is more chemo and the dreaded leg injections! They have agreed to give Ben a drug to relax him prior to the injections so we are hoping it won't be as stressful for him.

The Boys Picked a Name!

The kitten's name is Shaggy (Scooby Doo's buddy). Thank you to all who gave suggestions - we are just happy the boys finally agreed on a name!

We just returned from our daily hospital visit. Ben received his antibiotic infusions and had his blood drawn. Unfortuantely, his numbers are down yet again (I think we are playing How Low Can You Go?) so we will be continuing the antibiotic infusions and neutropenic precautions for awhile.

Low Again

Ben had another chemo treatment today. Unfortunately, his white blood count is down yet again and the prediction is that it will get even lower as the impact of the current round of chemo treatments hits. He is currently receiving two types of antibiotics through his PICC line every day (the good news is that he doesn't have to take the pill antibiotic that he had to take earlier this week which tastes horrible) and this will likely be the case at least through the weekend.

The blood transfusion yesterday brought his hemoglobin level up so he is feeling better today and not nearly as tired. Looks much better too. Better to have some color in those cheeks! Speaking of cheeks his right side is still pretty swollen due to what they believe is an infection in a saliva gland. Hopefully the antibiotics will help this soon as it is sometimes pretty painful for him. But he does like the fact that he is supposed to suck on sour hard candies as part of his "medicine".

Please Donate Blood

If your blood type is A-, you live in the Los Angeles area and you are healthy, we would appreciate blood donations for Ben. We have added a link in the right margin for the Cedars blood donation facility. Just give his name when you donate -- everything is set up at the donor facility if you have his first and last name.

Thanks very much.

Sometimes, cancer treatment requires some creativity and a sense of humor

Ben has to take this yucky stuff called Mercaptopurine every day. It resembles a nutrient cancer cells need to grow, and when they suck up the Mercaptopurine instead of the nutrient, they can't grow. So it's important stuff for him to take.

It tastes terrible. It's a pill. He doesn't swallow pills yet, so we crush it and mix it with juice. He stills hates it.

He's usually a good sport, but when he's having a tough day (like today, when he needed a blood transfusion and a bunch of other stuff because his numbers were low), sometimes he really fights it. And today, let me tell you, he was fighting it.

So we tried some bribery. Lots of things. And nothing was working. So finally, I had an idea.

"Ben, if you just finish it, I'll pull down my pants and you can spank me one time as hard as you want."

LOL

His first instinct, with genes from two lawyers, is to negotiate for more smacks plus more stuff. But I'm a professional. Years of experience negotiating much bigger deals.

"Ben, I'm going to set the timer for 30 seconds. If you finish drinking before it goes off, you get to spank me one time. Otherwise, you don't get to spank me at all and you still have to drink it."

I set the timer. It starts ticking down.

"And Ben, I'll also give you a dollar."

He runs to the drink, chugs the rest, and wails on me with enormous pleasure.

No, I did not like it. You sick person, you.

LOL

This is frustrating!!

Well, Ben had another chemo treatment today. Unfortunately, he is neutropenic again which means the precautions are back in place and he is back on antibiotics. This time it is in pill form which he has had before and he really does not like. He is currently negotiating to receive perks if he cooperates and takes them - he is asking for a dollar a pill. :)

His hemoglobin is also very low so they are scheduling to give him a blood transfusion tomorrow after his chemo treatment so any of you compatible donors out there - please donate!!

Name This Kitten

Here he is -- still no name. Suggestions are welcome!

Tee hee

We got another cat yesterday! Adopted a male kitten from a shelter. He's getting fixed today, then Nicole and the boys get to pick him up. Photos to follow.

No name yet. Suggestions are welcome. Nominees to date are "ewok cat" and "stripey." He's a brownish-grey and white tabby.

Cajun Ben

We're doing pretty well. As the photos demonstrate, Ben and I went fishing today. (David did not want to come.) He caught one, I caught one, and then we collaborated on a third channel catfish. And, as also depicted, we cooked them. Ben was going to try it but changed his mind. I tried it and did not like my own cooking. LOL

Still doing great

Ben started another round of chemo yesterday. We had a long day at the hospital (over 8 hours) but Ben did great. He received a lot of attention from the nurses because he decided to use gel on his hair and had a very cute spiked look. He even had someone offer to be his girlfriend - but he said she would have to wait until he was 15.

Today was another day of chemo - but much shorter. Our visit was only about 2 1/2 hours. Our infusion center visit was made much easier because of a wonderful volunteer who kept us company and played Battleship with Ben. She is a 16 year old girl who was diagnosed with leukemia when she was 6 1/2 so she totally understands everything Ben is going through. She was very sweet. Ben didn't want to ask her any questions, but he did spend a lot of time trying to impress her!

Ben is completely wiped out from the drugs and is now taking a nap before we go pick up David from camp. It sure is nice that all is calm once again!

Great News!

Nicole just called. She's on the way home from the hospital with Ben, who had very good test results. He is no longer neutropenic and he doesn't need the IV pumps anymore!

Tomorrow Ben starts the next round of chemo. He'll need to be in the hospital for like 8 hours, I think because he's getting the mustard gas stuff again and needs lots of hydration to protect his kidneys.

OK, back to work. I am sure that Nicole will correct anything inaccurate I've written above.

Still Struggling

Another not-so-great day for Ben. His temperature was pretty high, close to the point where he would need to be re-admitted to the hospital. We had an appointment at the Infusion Center anyway for some antibiotics, blood tests and to get his IV pump refilled. Today's results were not great -- white counts are still low, so we are back on neutropenic precautions. (That basically means he can't eat certain things and we have to be really careful about exposing him to anyone who might be sick.) We did not have to stay at the hospital overnight, but they added a second antibiotic IV pump (so he now has two pumps, one for each port on his PICC line) and we have to watch his temperature carefully. If it goes above 100.5, we're going to be re-admitted.

This is not a big deal, but it is a pain. :(

Phew!

We're all home. I packed a bag for Nicole and met everyone over there, but Ben was released just before I arrived. His temperature dropped. This excitement is good for us, because otherwise we'd get bored!

The Friday Night Party at Cedars!

Nicole just called from the Infusion Center. They went in just to get Ben's pump refilled and stuff, but his fever is back. If they can't get it down, he'll have to be admitted again. I'm headed over there shortly. Will advise what's going on later.

Prayers and good thoughts would be most appreciated.

Numbers

Ben is still on the pump for his antibiotics and we have been going to the hospital every afternoon to get additional antibiotics and to have the pump restocked. He was having a bad reaction to one of the chemo drugs yesterday but he is feeling much better today although he is still exhausted. The current blood tests are not great - his white blood count and hemoglobin are pretty low (which explains why he is so tired). We need to take the neutropenic precautions again and he may need a transfusion tomorrow for the low hemoglobin if the number doesn't get higher. They have decided not to take him off the pump on Saturday as originally planned and keep him on it until his numbers look better. Also, they say that there is a good chance that the numbers will not be high enough to start up the chemo again on Tuesday. We will just need to wait until he gets stronger and then we can start up again.

We Are Home!!!

They discharged us this afternoon! Ben needs to get antibiotics through his PICC line so he is hooked up to a pump that he needs to carry around in a little bag. It is kind of a pain...but better than being at the hospital!

We will need to go to the Infusion Center everyday for the next 4 days or so to get the antibiotics restocked and to have the nurses check him out as they will be monitoring him pretty closely but we are so happy to be home (and David is thrilled to have his big brother back)!

We won't know whether the chemo schedule for next week will stay on track until probably Saturday or Monday - they will need to see what his numbers are to see whether his body is ready for the next round. We will keep you posted.

Looking good to go home

Ben's temperature this morning was 98.4, so we should be discharged today unless something changes. He is having another spinal tap at 10, and we should go home after that. I had planned to go to work as soon as Nicole got here, but Ben asked me to stay for the spinal tap so I'm going to do that.

We're really excited to go home!

Light the Night!

My mom just started an active.com page in the Light the Night program for the Leukemia and Lymphoma Society. If you want to donate, please click the link in the right margin. Or go here: http://www.active.com/donate/ltnPhoeni/2244_HPFreedman

Thanks, Mom!

Home tomorrow?

Although there was some discussion of perhaps sending Ben home today, Dr. Hurvitz tentatively is planning to send him home tomorrow after his spinal. This assumes that his temperature does not go back up.

Nicole is in the hospital with Ben now, having spent last night with him. David is home with Nicole's mom. I am at work, slaying evil dragons. Tonight, I'll go to the hospital for the night shift.

Thanks to everyone for the well wishes and support. This cancer thing can be a real pain. :)

Good Morning from Cedars!

It is a lovely morning here in Los Angeles! Ben just finished breakfast -- french toast and hot chocolate. His temperature is down, but we are stuck here for a few days for monitoring and IV antibiotics. He is getting three different antibiotics, and they are testing his blood a lot . They are doing cultures to see what creatures are bugging him and also testing to make sure the antibiotics are getting into his blood at the right levels (i.e. therapeutic and non-toxic).

The wireless internet works here now, so I am pretty happy about that. We are missing the first day of the Kings development camp, but I should be able to get reports about it online.

If anyone has questions about what's going on, post them and we'll try to answer as best as we can.

Still At The Hospital

I am home for the night with David and Scott is with Ben at the hospital. If this post is incoherent it is only for lack of sleep and I will make any revisions necessary in the morning!

Ben is currently receiving 3 different kinds of antibiotics to try to get rid of whatever infection is in him. His temperature went as high as 103.8 this afternoon but has come down this evening to just under 100. Ben's doctor came in for a visit after I left to take David home and said that he will likely need to stay at the hospital for a few days so they can grow some cultures and continue to give him the antibiotics to try to get this thing under control. Her guess is that it is an infection in his PICC line. This is something that happens - just one of the lovely side effects of all that is going on. They shouldn't have to change the PICC line. Will continue to give the antibiotics and try to kill whatever is in there.

Ben was not happy about the news that he needed to be admitted to the hospital again but after we got up to the Pediatrics floor he was excited to go pick out which Fun Center to bring into his room. He is not feeling so great with the temperature combined with the heartburn and tummy trouble from the antibiotics but he is still in pretty good spirits.

As of now, his spinal tap is still on schedule for Tuesday. My understanding is that unless he is really sick the chemo schedule will stay on track.

103.5

That's Ben's temperature right now, so he's being admitted to the hospital. It will be my turn to spend the night with him. Unfortunately, I need to work this afternoon, so I'll need to go in and then come back for the evening. We'll probably have someone take David so he doesn't have to spend the whole day in the hospital.

Ugh . . .