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.