Overdue Update

Hi, Friends. I'm sorry for taking so long to update you all on Ben. It's just that sometimes I'm emotionally drained, and I just don't have the energy left to type life out on the blog. I hope you understand.

Ben went through chemo fairly well this time. He didn't have as heavy of medicine, so his body hasn't been as sick after. He is still throwing up several times a day, but at least it's only several instead of eight or ten like last time. He doesn't have very much stamina either. He gets very worn out very quickly. I've been cancelling therapy appointments all week because he just doesn't feel good or have the energy to get through them.

It's crazy to me just how busy that little guy's schedule is. There is hardly a day that goes by that he doesn't have at least one therapy visit, or a trip to the hospital for a doctor's appointment. No four year old should be that busy!

So, in all, things are pretty much "normal" right now. Please keep us all in your prayers. I know they help!

Love to you all, Jana

Sigh...

We have had a couple of rough days. Ben had an MRI scheduled on Wednesday morning, and we had to be at PCMC by 7:15 am. Since he is so young, they sedate him for the MRIs. So, we got there, they sedated him, and he went in for his MRI. Later in the day, after he had woken up, we went up to the Oncology clinic to find out the results. When we got there they told us that instead of imaging Ben's brain and spine, they had only imaged his brain. So, we would have to do the whole thing over again the next afternoon (they can't sedate twice in the same day).

We went home, and unfortunately the sedation medicine made Ben feel very grumpy. On top of that, my two year wouldn't take his nap for some reason, so by 5 pm I had two very grumpy little boys on my hands (bedtime couldn't come fast enough!). I was pretty grumpy myself because of everything that had happened that day, so when Ben's feeding tube accidentally came out as we were putting him to bed, I almost started to cry.

We called the hospital, and they scheduled Ben to go in for a new feeding tube the next morning. I again had to have him up at the hospital early. He got the new tube in, and it was rather uncomfortable for him. I tried to distract him by talking to him, and he was such a little trooper. He is always so patient and good during procedures, even when they hurt. Unfortunately, all of the fishing around in his intestines was more than his little self could handle and it made him throw up. Poor little guy.

A few hours later we were headed to sedation again. Ben wasn't nearly as grumpy when he woke up from sedation the second time, in fact he did very well. When we put him to bed last night he was asleep in about three seconds, he was so tired from the activities of the last two days. And he seems to be tired but doing well this morning.

I would have fallen asleep quickly last night myself if it weren't for the very had headache I had from my stressful two days. I'm still trying to get it to go away.

Ben's MRIs look good, which is always wonderful news. He goes in for his next chemo treatment next week, which is kind of a bummer because we just have his throwing up back under control, and the cycle is going to start all over again.

On a positive note, both his physical therapist and speech therapist (as well as his pre-school teacher) say that he is making excellent progress, and that he is progressing faster than they thought he would. A big smile for that news!

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.