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 . . .

How about we call this a sleepover?

We're in Ben's room in the infusion center. He's got his IV and antibiotics going, and he's sucking on a baby bottle pop I brought him. (Candy -- flavored sugar, basically).

Nicole will spend the night here with Ben. I'll take David home soon.

This is nothing to worry about -- they just need to get the fever under control. Welcome to the lovely world of chemotherapy.

Ugh

Ben's fever went over the threshold, so he will be in the Infusion Center overnight. If the antibiotics don't improve his condition immediately, he will be admitted to the main hospital. Nicole and David are there with him now; I'll be heading over as soon as I can.

Clinic Visit

Ben had another quick visit to the hospital today - but just to have his blood tested. His white blood count is actually okay at the moment but his hemoglobin and platelets are down so they will need to see him for another test on Monday before the next spinal tap which is currently scheduled for Tuesday. The lower numbers are likely a result of all the chemotherapy he received the past two weeks and will require close monitoring (also causes exhaustion and grumpiness!).

The other issue we need to watch very closely is his temperature which is 100.4. This is the magic number which usually requires an automatic call and possible visit to the hospital. If it goes up any higher we will likely need to bring him back in - hopefully just for some antibiotics and not for another hospital stay!

The boys are happy to be back home and are currently playing their computer Star Wars game. They have been making some funny comments making fun of their Uncle Chris because they are better at the game than he is. (Uncle Chris came and hung out with Ben so that I could take David to the doctor for his 5 year check-up this morning - David is in great shape and received 3 shots with no crying or complaining!!)

Make a Wish, Ben!

We are meeting with the Make-a-Wish Foundation people tonight. Ben apparently has qualified for a wish! So they're coming to talk to him about what he wants tonight. I'll let you all know what he's going to do once he makes a final decision.

There is a link in the right margin if you want to support the Make-a-Wish Foundation.

Afternoon Update

Everything went well today. He ended up getting the vincristine before they put him under, and he just had to stay a few hours in the afternoon to make sure he did not have an adverse reaction to the shots.

We are starting to find hair on the pillow, so it looks like I'll be shaving my head so we match. It falls out gradually, so don't get too excited. ;)

Happy July 4th to everyone!

Big Day

We are going in today for three things -- methotrexate by spinal tap, vincristine via PICC line and the dreaded PEG-Asparaginase shots in the thighs. The good news is that, since Ben will be sedated for the spinal tap, they can give him the shots while he's out. Now his question is whether they can sedate him every time he gets the shots!

Anyway, I'm going in for the spinal tap and shots, then I'll leave Ben and Nicole to get the vincristine afterwards. They used to give him the vincristine at the same time as the methotrexate, but apparently they need to watch him reaction to the shots first. David is staying home with Nicole's mom.

Thanks again to everyone for your continued support and encouragement.

Fishing Report

We didn't catch anything. Then again, we didn't really fish much. It was pretty windy and there were a lot of waterskiiers on the lake, which made the water very wavy and choppy. Ben and Nicole were not feeling so well, and we just didn't get much fishing in. Left early too. :(