Thursday, November 29, 2007

OK, my hair's fixed.


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.

Wednesday, November 28, 2007

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!

Tuesday, November 27, 2007


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!

Monday, November 26, 2007

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.

Friday, November 23, 2007

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!

Thursday, November 22, 2007

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!


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.


[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.

Tuesday, November 20, 2007

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.

Friday, November 16, 2007

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!

Tuesday, November 13, 2007

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!

Sunday, November 11, 2007

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!

Friday, November 9, 2007

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.

Wednesday, November 7, 2007

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.

Monday, November 5, 2007

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.

Thursday, November 1, 2007


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!