This has been a much better week for Little Ben! He is only throwing up once, maybe twice a day, and we almost have his food up to a normal level. Since his blood transfusion last Wednesday he's had more energy. Thank you for all of your extra prayers for Ben. I have no doubt that they have been helping him.

Ben is also "talking" more. Not actual words, but he is making more and more noises all the time. His speech therapist has a goal for him to be saying one syllable words by the end of the school year. I would like him to be completely talking by the end of the school year, but I realize that I have to be patient (something I'm getting a master's degree in right now!), and let things take their normal course. But the fact that he is vocalizing so much more is very, very encouraging - for us and for him!

It's been a killer week with Ben. His Broviak line that he gets his chemo through (and that he was getting his food though) broke on Sunday so I spent the day in the ER with him, he was really sick on Monday (no energy at all - he couldn't even sit up), he had to have a transfusion on Tuesday (the reason he was so weak on Monday), and he threw up 8 times yesterday. Today has been the first day he has felt okay all week. The TPN hasn't really been working for him, so we've decided to drop it and go back to his other food. Something's got to start working for this boy sometime, right?

Ben is finally starting to do better after this last chemo treatment. We were up at the hospital doing some routine visits on Wednesday, and his doctor suggested that we try feeding him a different way. There is a type of food called TPN (Total Something-or-other Nutrition) that is pumped in through IV, completely bi-passing his stomach and intestines (we use his same permanent IV line that his chemo goes through - it's called a Broviac). Ben's doctor wanted to try that to give his bowels a break and to see if we could stop the cycle of vomiting. We think that the throwing up is now psychological again, but also perhaps physical from being feed directly into his small intestine for so long. They are getting worried about the damage to his throat and esophagus, and want to give his whole body a break for awhile. He has been on it for 24 hours now and has only thrown up once right before bed tonight (which might be partly due to being so tired).

Since he is finally getting some full nutrition in him for the first time in two weeks, Ben had a lot more energy today and was back to his old, smiling self. It was very good to see. I don't know how long he will have to be on the TPN, hopefully not long. Our main goal, of course, is to get him eating again, but that is still very slow in coming at the moment.

Ben seems to be getting stronger physically. He hasn't said any new words yet, but he is doing better at supporting his own weight if there is someone there to help him keep his balance. Small successes, but successes nonetheless.

A Long Week

Poor Ben has been very sick this week. Each chemo treatment just seems to get a little harder for him to get over than the last. I think it's because his little body is just getting so worn down. He has been throwing up a lot this week, and we've even had to put him on IV fluids every night to try to keep him hydrated. He's also hardly been able to process any food at all. He's only been able to keep down about 200 calories a day at the most. The end of last week he was getting so weak that he could hardly sit up. Friday morning he wasn't even interested in watching his normal morning shows, which really says how sick he has been.

Thankfully, he is doing a bit better today. I called the hospital to get some IV anti-nausea medications. He can't throw them up, and they just seem to work better. He has been on those for a couple of days, and it seems to be helping, though he still throws up several times a day. We have his food up slightly (very slightly), so he is getting a few more calories, and he is sitting up playing with a toy as I type this. He is still pale and not feeling well, but definitely heading in the right direction.

As for me, I'm exhausted physically and emotionally. Weeks like this are hard on the whole family, but especially on Ben and me. I didn't sleep very well all week (either because I was dealing with Ben throwing up, or worried that he was going to throw up and I wouldn't hear him), and to top it off, my two year old uncharacteristically woke up about 12:30 a.m. crying hysterically and wouldn't go back to sleep until about 4:30 a.m. I've got several appointments with Ben throughout the week, but other than that I am hoping for things to go a little better now.

Fifth chemo treatment - Done!

Well, we are officially halfway through with Ben's chemotherapy. Yay! He got home today from the hospital, and he is tired but doing well. The nurses were able to control his nausea really well, and I am just hoping that I will be able to do the same thing here at home. But, it is a bit harder here, because I don't have intravenous medications, which work a lot better than the oral ones. I also have a hard time getting up every two hours at night to give him is next medicine like they do in the hospital. But, I'll do my best to keep the throwing up at bay, and help him feel as comfortable as possible. He always feels very tired and sick for at least a week after chemotherapy, so we are hoping that next weekend he'll be doing somewhat better.

Ben's next chemo treatment is the middle of November (which means he won't be sick for Halloween - yay!), and his last treatment is the first week of March. Five more months, and then we are done with chemotherapy! We will still have the physical problems to deal with, but at least his body will be able to focus on re-learning instead of on trying to make it through chemotherapy.

Ben's at home pre-school lessons are going well, and he now has a physical therapist from the school district coming out twice a week to work with him. His new PT really seems to know what she is doing, and I am impressed with her so far. Her goals by the end of the school year are to have him standing on his own for 3 - 5 minutes and have him using his walker by himself (plus some other things, but those are the main ones). Those two things alone with give him a lot more freedom. And when you are four years old, those freedoms are very important.