A Wonderful Christmas!

I am happy to report that we had a wonderful Christmas - at home! Ben didn't even get a hint of a fever. I have not doubt at all that your prayers and your faith made all the difference. Thank you all so very much!

As you can see in the picture, Ben loved the present Santa brought him. He played with it all morning long! He also got a CD of his favorite music, Mr. Potato Head, and a very cool froggy book, among a few other things. Not a bad Christmas for a four year old!

I am so grateful we had such a wonderful Christmas, and were able to stay here at home for it. The Lord has really blessed us so much this year, and one of those blessings has been in the form of the best family and friends anyone could ever have. Thank you all so very much for your service, love, support, faith, and prayers. Words are insufficient to thank you all for everything you have done for us. We love you all very much

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!