First day of school ever!

We dropped Ben at Renaissance Academy this morning for his first day in Kindergarten.

He hasn't gone to preschool so he was a bit nervous because it's the first day he goes somewhere by himself (except for Primary, but that somehow doesn't seem to count...)

The people at Renaissance are great. His teacher (Mrs. Kerr) is very nice and she is aware of the things Ben needs. He also has an aid that talks sign language really well (Mrs. Snarr), and she'll be there most of the time. We are hoping he'll learn as he interacts with her, which will make us learn too. We are excited about that, as it'll help us communicate better.

On top of that he has a "special" teacher. She (Mrs. Pay) and her assistants (Mrs. Scott, Mrs. Kerr) help children with disabilities. He gets sign language classes, and some PT, OT and ST.

He is at school right now. We are going to pick him up at 11:00 AM. We'll keep you posted on how he does.

In other news, Ben is doing better all the time. He is able to eat the same lunch/dinner as the rest of the family, albeit in very small portions. We still need to supplement his nutrition with formula through his stomach button, but he's progressing really well in his eating of solids.

He still has problems swallowing water because it goes down too fast for his throat to react: he chokes and coughs. But with practice his epiglottis and vocal cords will learn to react faster, and then he'll be able to swallow water without choking.

He is crawling all over the house, and the other day he did something cool. He was downstairs with Melisa and Jared, but they came upstairs. I thought "I need to get Ben", but when I turned, he was upstairs too. He crawled upstairs all by himself. He was laying on the last step of the stairs, and wouldn't move because he was so tired! We have been practicing, but we didn't expect him to do it by his own so fast!

He can also make more sounds, but his speech is still very slow and blurred. We know what he says most of the time, but it's hard sometimes. Hopefully, between the sign language at school and his ST he'll get better.

We're going to pick Ben up now.

Jerry

Team Ben

Hello Family and Friends,

We are once again taking part in the HopeKids Wasatch Adventure to raise money for HOPEKIDS INC. I am going to be honest, and let you know that I have a very hard time asking for donations, especially in this economy. I know that none of us are in great shape, so I really wouldn't be doing this if I didn't think it was for a worthy cause. Please know that I won't think badly of anyone who isn't in the situation to donate. I completely understand! But if you are, we would be very grateful, and this is why.

HopeKids has been there for Ben and for us from the very beginning of Ben's illness. They've given us support, love, a social network of families that understand, and the opportunity to get together with these families while spending time with our own. We appreciate HopeKids so much, that whenever we meet a family who qualifies we ask, "Have you heard of HopeKids?" We are so grateful they are there, not just for us, but for other families who need them at those tough times in their lives.

But HopeKids can't do it without the support of people like you. Will you please consider making a donation to help keep this wonderful organization running? You can be assured that your money goes to bless the lives of children and families who really need it.

You can make a donation by visiting our FirstGiving page: http://www.firstgiving.com/benblanco

You can donate online with a credit card. All donations are secure and sent directly to HOPEKIDS INC by FirstGiving, who will email you a printable record of your donation.

Please send our page on to anyone who might like to donate!

We appreciate and love you all!

Jerry, Jana, and Ben Blanco

No news is good news

Hello, Everyone! It's been quite a while since I've updated this blog. But you all can take that as a very good sign - Ben is doing great! It has been three months since his last chemo treatment, and it's amazing how much better a person feels when they don't have a bunch of toxic chemicals running through their body! Ben hardly throws up at all anymore, he has more energy, smiles and laughs more, and is getting his hair back. He is eating better and better all the time. He doesn't eat nearly enough to support himself yet, but he has eaten more the last few weeks than the whole year and a half combined. His favorite "meal" is a couple of crackers with some cut up cheese. He loves it!

Ben is also doing great with his therapy. He continues to do his horse riding (which he loves, and is helping him a ton!), and is also doing some out patient physical therapy through the summer. Ben is learning to crawl again, and is doing pretty well at it. He is still trying to build his upper body strength, and unfortunately does a forehead plant into the floor every now and then, but he'll get there. He also needs to stop for pretty frequent rests, but we are very pleased with the progress he is making. And the most important thing is that he's pleased with it, as well.

He is also "talking" all the time now. He is doing better and better with his sign language, and has been adding some speech to it. He "talks" to me with his voice all throughout the day, and sometimes I can figure it out within context, sometimes I can't, but I love that he is so motivated to get it out. It's a very rare situation anymore when we can't figure out what he wants with one form of communication or another. What a relief that must be to him!

Ben had his three month MRI a couple of weeks ago and... it was clean! No sign of cancer regrowth! His hearing is the same, which was also good news because he hasn't lost anymore hearing, and his eyes continue to improve all the time.

Ben also had the chance to go to summer camp about a month ago (the above pic is from camp). It is a camp through PCMC specifically for cancer patients and their siblings. To say that Ben loved every second of it would be an understatement! He had the best time! He made crafts, sang songs, played games, saw therapy and rescue dogs, went swimming, etc. I haven't seem him that bright and happy in a long time (except when He met Winnie the Pooh and Gang). Every time he sees one the crafts he made or gets to wear his camp T-Shirt he gets that bright happy look on his face all over again. We are just so grateful for the wonderful volunteers who made it all possible for him. I don't know if they realize just what a significant difference they make in the lives of these special kids.

So, as you can see, things have only been going up, up, up for our sweet little Benjamin. We will continue to keep you posted from time to time. But remember, no news is very good news! :)

On the News

Our sweet Ben was on the news on Saturday night. You can read ABC 4 News blog about it here: http://www.abc4.com/news/local/story/Marti-Skold-Faces-of-Hope/wvvGQq44TkO1Fxs-eUX9bQ.cspx

Ben continues to do really well. His nausea is all but gone, and he works hard every day with his different therapies. We are running here and there, and when not doing that we are working at home with the different things the therapists want us to do. It is busy, but completely worth it because of all the progress that Ben has been making. He is getting stronger and stronger all the time. We still have a long way to go with his eating and speaking, but he is slowly improving in those areas as well.

Ben has also started going back to church and is loving it! He thinks Sacrament Meeting is pretty boring, but he loves primary and has a fabulous teacher. He always has a big smile on his face when we pick him up from his primary class each week.

So, only good things to report this time around. We hope this post finds all of you well and happy.

Much love,

Jerry, Jana, Ben, and the gang

The Happiest Day of Ben's Life

We recently returned from Ben's wish trip to Disney World meet Winnie the Pooh and all the friends of the Hundred Acre Wood. To say Ben had the time of his life would be an understatement! (And this is one little boy who deserved it!) We wish you could have been there to see it in person, but hopefully these pics will give you a glimpse of how wonderful it was. We are so grateful to Make-A-Wish of Utah, our sponsor, and Give Kids the World in Florida for everything they did to make our vacation the most wonderful week we have ever spent together as a family.

More Steps Forward

On Monday Ben got his central line out, proof that chemo really is done and he is one the mend. He wasn't sure how he felt about having something that has been a part of him for over a year suddenly disappear, but Mom and Dad couldn't be happier.

Even though we explained several times that his tummy tube would still be there after the other tube was gone, Ben started crying when he saw Mom bring the feeding bag out and the reality hit that he still had to attached to his tether. That was pretty hard for the Mommy and Daddy hearts to take. But it wasn't all bad. Since Monday, he has been more motivated to eat than he has since this all happened. And that coincides perfectly with our visit to the Dysphagia clinic up at PCMC yesterday. They helped us set up a plan to get Ben off the feeding tube. We have a long road ahead with a lot of baby steps in between, but I am hopeful that a year from now our sweet Ben will be tether free.

Today we are off to the dentist to find out the damage report from all of that vomiting the past year. I'm pretty nervous for what we will find out.

So, we need to have a swallow study, a lot more therapy (especially OT and Feeding Therapy), and many more horse rides ahead of us. We'll be sure to keep you posted.

Lots of love from us to you.

It has been a very busy week of multiple hospital visits. Ben is now officially "Off Treatment." He had his follow-up visit at the clinic at PCMC on Monday. Let let us know the always welcome news that the MRI he had done on Friday shows that things are stable in his brain and spine. Our next MRI will be in three months, and we are praying for the same good result.

We found out at his hearing test on Monday that Ben's hearing is also unchanged. We are very grateful that the last chemo treatments didn't make it worse! He is very borderline as to whether he would need a hearing aid, so we have decided to not get one for now, and get another hearing test in three months to see how he is doing.

We went up to the hospital yesterday for our monthly eye appointment. Here the news is not so good. His left eye is starting to drift up again, and his right eye is turned in, all due to the brain tumor. Our doctor said that chemotherapy does affect kids eyes in strange ways. (Sometimes the cure is almost as bad as the disease.) Ben will definitely need additional eye surgeries, one on each eye, but our doctor wants to wait a couple of months for things to stabilize, and do it then. I'll keep you posted on that one.

For our final good news, Ben is off one more medication, and gets his central line out on Monday. One more tube will soon be gone! Then he will only have his feeding tube left. Our little guy started out in the PICU with tubes everywhere (he had four chest tubes draining his lungs at one point), and now we are going to be down to one! And we no longer have to give him constant medications all day long, he is only on three now. Our guy has come a long, long way.

As always, thank you for your love, support, and prayers. We pray for blessings back on your heads!