Hearing Update

Ben had his follow up hearing appointment on Wednesday, and the results haven't changed at all. He still had no response to the higher frequency sounds such as "s, f, th". He will mostly have problems in a noisy room, or if there is background noise from a TV or radio. They said that it is nothing something to be overly concerned with at the moment, and have decided to wait until he is done with chemotherapy and see if there are any more changes to his hearing before we make a decision about hearing aids.

Otherwise, Ben is doing well this week. He is hardly throwing up at all, which is a miracle the week after chemotherapy. I'm surprised what a difference cutting the amount of chemotherapy he received has made.

Ben is also loving cruising around the house with his walker. It really gives him a sense of independence and freedom that he hasn't had since his tumor. So, in all, it is a happy report today.

The one thing that does worry me is that his blood counts will be hitting zero right before Christmas, so if he gets a fever next week, we might be spending Christmas at the hospital. We could sure use some prayers so that doesn't happen!

Love to all, Jana

Ben's New Walker!

Eye Surgery

I don't know if we've written about this, but Ben has been having problems with his eyes since his tumor in January. His eyes haven't been lining up either vertically or horizontally. This is a very common problem with Medulloblastomas. His eye doctor at PCMC has been watching him very closely to see if and when he would need eye surgery. At his appointment yesterday we decided that the time is right to do surgery on the muscle in his left eye. So, in January before Ben's next chemo treatment they are going to make a small incision in the skin under his left eye, cut the muscle that is not working correctly, and re-attach it so that it will hold his eye in the correct position. It is a fairly simple, same-day surgery, and he should be feeling much better after just a few days.

All of these problems that are manifesting themselves are a reminder that the human brain just isn't meant to have cancer growing in it. It's discouraging on one hand, but we keep reminding ourselves that it could be much, much worse.

Ben has his next hearing appointment on Wednesday. We'll let you know what we find out.

Good News, ...and Bad

Ben is in the hospital right now getting his 7th chemotherapy treatment. The drug he is getting this time (cisplatin), is the one that always makes him sick for weeks afterwards. Before he leaves the hospital this time, they are going to give him a dose of a steroid that will help curb the nausea for the few weeks after he gets home. For Little Ben's sake, I hope it helps!

Ben also had his swallow study yesterday. The good news is that it went really well. He is now approved to drink all consistencies of liquids. That means he can drink even water on a limited basis. They still want us to thicken his liquid a little bit, but for the most part he is okay to drink whatever. Very happy news.

As far as chewing is concerned, he is doing much better with it, but still has some work to do before he can eat solid foods. But, he is cleared to eat things like pancakes with lots of syrup, scrambled eggs, Kix, and especially Cheetos (the speech therapist told me those are especially good because they teach him to chew, but dissolve into almost nothing in his mouth). Super syrupy pancakes, Cheetos, chocolate milk -- what four year old wouldn't love that diet?!?

Now, for the bad news. Cisplatin, the chemo drug that makes Ben really sick, can cause permanent hearing loss. So, every time before we go in for chemotherapy, Ben has a hearing test to make sure his hearing is still okay. So far, he has been okay. He had lost the ability to hear sounds in the upper registers, but nothing that would affect every day life. Well, yesterday that all changed. When the Audiologist tested him she found that he has now permanently lost hearing within the registers that allow him to hear human speaking. Simply put, he can no longer hear people speaking such sounds as "sh, f, th, h" etc.

We had been warned about this from the outset, but being warned doesn't make the reality of it any easier. Yes, I cried last night. I try to tell myself that of all things that could go wrong, this is a very minor one. But my mommy heart is just having a hard time trying to see the positive in a situation that means my little baby will have this problem the rest of his life.

So, what does it all mean. First, they are only going to give him half doses of Cisplatin from this point forward. He only has two doses of it left (one after today), so we are hoping that he won't suffer any further hearing loss. Second, they are going to retest in a week to verify results and get more data. From that information they will most likely fit him for hearing aids. Since he is still learning to talk they want to make sure that he can hear the sounds both from other people and from himself so he relearns correctly.

Well, that's our news for this time. Bitter-sweet. I'll update more later.

Jana

Hello, Family and Friends. Ben is doing well right now. He only throws up once a day, and sometimes not at all. And he is happy and has a little more energy. It is amazing how much of a difference the different chemotherapy treatments make in how he feels. He did have to have a blood transfusion and spent the night in the hospital because of a fever before Thanksgiving, but he is completely over that and doing well.

That's the good news. The bad news is that he goes back in for chemo this week and it is one of the tougher treatments. So, he feels better just in time to feel horrible again. We're just hoping the won't still be feeling overly sick at Christmas. We know that is no way he will be feeling good, we just hope he doesn't feel really bad.

Ben has been making tons of noises and sounds these days. He is learning to make his hard vowel sounds, and is doing a really good job. He is so proud of himself when he does it, and so he is really motivated to work hard and get the sounds out.

He's also doing better all the time with his eating. His little brother dropped a bunch of Kix cereal all over the floor the other day, and Ben started eating it. He ate tons, one piece at a time, and didn't choke on any of it! He enjoyed it so much that he started crying when they were all gone. I'll have to buy more Kix! He's improved enough that we are going to have another swallow study done while he's up at the hospital this week. We'll let you all know how he does!

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!