Accidental Email

Hi Everyone. Please ignore the email you all got last night about Ben's new walker. The system had a glitch and sent out a five year old post by mistake.

On the upside, Ben is doing super well. He's stronger then ever, and even tries to take off walking without his walker (as his chipped tooth will attest).

I hope you all are having a great summer!

Jana

Yearly update

Hello all,

we haven't updated this for a full year! Sorry about that. :(

Ben is doing great. He's now a first grader, although he spends most of his day in Kindergarten. He's learning some concepts well, but seriously struggles with others. No surprise there, but it's still hard to swallow some days.

He can walk and climb stairs, but his balance is very poor, and his response time is too long, which means that when he lets go from whatever he's holding on to, he starts falling, then he realizes he's falling, then he hits the floor, and then his brain tells his legs to compensate. In short, he can walk slowly, but he'll fall if he's not holding on to something.

Ben has been fitted with hearing aids. The radiation touched tangentially his inner ear, so he lost a little bit of hearing. He can still hear pretty well without the aids, but the sounds come across muffled. He can't hear the 's', 'p' and 'th' sounds at all, so the hearing aids help him in that range.

The first evening after wearing them the whole day, I started his music (Mormon Tabernacle Choir every night) and put him in bed. When I then took the aids off, he started signalling he wanted them on again to hear the MTC better. Of course, I had to give in...

His speech is slurred and slow, but getting better. He can now form words, and most of them are intelligible, at least for us. His talk is very slow, but if you have the patience, he can communicate with you and let you know what he wants. His brain processing is also slow, so when you ask him a question, you need to wait for him patiently to process and respond.

He hasn't had any food or drink through his stomach button for some 2 or 3 months (or more?) now, so we have a surgeon's appointment next Friday. He'll probably become Buttonless Ben in a couple of weeks! That'll be very good, especially for when I carry him on my shoulder coming downstairs (a favorite game of ours). I won't pull his button off! (He has pulled is button off his "panza" several times. At first we were all paranoid about it. By now, we just wash it, moisture it and push it back in. No biggy for him or us...)

He's a very good older brother to Jared, and Jared helps him when he can. They're developing a beautiful relationship, except when they fight over some toy. It's funny to see them roll on the floor in a fight: Ben's attack is to grab-n-hug Jared as hard as he can, thus depriving Jared of his mobility. Jared's defense is, then,  to get out of reach and hit from a distance. When Jared is out of reach, he wins. When Ben gets him, it's a bear hug.  :D

Ben has a very sweet and determined soul. He copes with his limitations as well as he can, with a smile most of the time. He's learning to understand the world around him and mostly accepts it, with peace but not with resignation.

Of course, he'd like to do things like other kids, but most of the time he just does what he can and is happy achieving those little-for-others-but-big-for-him goals. For example, when other kids run, he gets a sense of pride and achievement in being able to climb the playground by himself.

I believe he will continue to improve not because his brain kindly allows him to, but because he wants to and his will is strong enough to beat his brain into submission. :)

We are blessed to have him with us and have the opportunity to care for him.

We'll try to keep this blog going, but as life stabilizes we'll probably incur in other year-long silences...

Thank you all for your support. Keep the prayers coming.

Love you all,
Gerardo

Ben on TV!

Hey, Everyone! Our Sweet Little Ben was on TV yesterday! For those of you who missed it, here is the link:

http://studio5.ksl.com/index.php?nid=71&sid=14134261&autostart=y&recommend=true

(Note: you may need to copy and paste it into your browser for it to work)

Ben Can Drink Root Beer!

It's been almost exactly two years since that fateful January day in 2009. But this January day in 2011 brought nothing but great news. Ben had a swallow study at the hospital this morning, and for the first time he has been cleared to eat and drink anything he wants, including water and root beer! He has been working hard on this, drinking from a syringe to practice, and praying every night that Heavenly Father would help him drink water again, and remembering to thank Him for every little success. Well, that work has payed off, and those prayers have been answered. Ben gets root beer for lunch today, and we are going to have a root beer float party this weekend to celebrate.

So, this January 18th, instead of having our boy's life hanging in the balance, we'll be drinking root beer, and we'll be grateful for every hard won swallow!

Good News

Ben went in for his MRI today marking six months off of treatment, and we are very happy to report that it shows no signs of cancer regrowth. Very good news! Our little trouper is doing great. He still gets quite tired, and struggles to get that food down without having it come back up on him (literally), but otherwise he is really doing well. He is enjoying school, working hard at his therapies, eating more bit by bit, and getting stronger every day. He is starting to talk a bit more intelligibly (at least to us), and is learning more ASL that is quickly becoming second nature to him. He gets up and down the couch by himself, and is crawling all over the house. Physically he is getting more mobile all the time. And of course, those smiles and hugs keep coming every day! We are very proud of our Ben and everything he has accomplished. He's our little hero!

My Really, Very, Extremely Bad Day

Hi Everyone,

I had "one of those days" last week, and I wanted to share it with you all to help you feel better about your lives. :) Plus, it was just too incredible not to share. So, enjoy! :)

I was woken up at 6 am with Ben's food beeping because it had run out early. I went in to help him, and was hoping to fall back to sleep, but then he let me know that he had poo and needed help. I thought he meant he needed me to take him to go poo, but no, the poo was already there and it wasn't just poo, it was diarrhea. So, I flushed his food with water and unhooked it from his stomach so I could change him, and he got very upset that I didn't let him push the water in with the syringe. Well, Ben can get pretty upset when he is frustrated about things, and he was cranky because he had been woken up by the food alarm to, so he started thrashing and crying, etc, all with his diaper half off and exposed diarrhea everywhere. Well, you can imagine what happened. Ben is a big, strong boy, so it took all of my strength to hold him still and clean him off enough to get him off the bed so I could clean his now pooey bed. I asked Ben if he had anymore poo that needed to come out. "No." Okay, so I pulled the sheet off to put it through a rinse cycle and then came back to take care of Ben. There was just one problem, Ben had more diarrhea while I was gone - on the carpet. I told him to hold still so it wouldn't get anywhere else, but he was still mad about the water syringe, so he started moving over to his food pole to show me that I had done it without him. I tried to stop him, because he was spreading the poo, but the more I tried to stop him, the more upset he got, and the more poo went on him and the carpet. In total frustration I called Jerry out of bed to come take Ben away to the bathtub so I could get the carpet clean.

With Ben with Jerry I left to go get the carpet cleaner, and when I got back to Ben's room, there was George (our dog), eating the poo, thereby totally grossing me out, not to mention getting it in his hair on his face. I took him to the bathroom and tried to clean his face the best I could with baby wipes and then put him outside. Oh, it was so disgusting. I mean, really?

So, Jerry thankfully got Ben off to school while I kept tackling the carpet. I cleaned and cleaned, and it looked like most of the mess wass coming up. I was trying to hurry because I needed to take the van in to get the safety and emissions testing done on it, and I wanted to be there as soon as I could to be first in line so I could get out in time to get a shower and then drive to Lehi to pick up Ben from school. Well, after I cleaned the carpet for awhile I noticed that the carpet cleaner wasn't soaking up the cleaning water anymore. I realized that I hadn't emptied the dirty water tank, so I took it out, and without thinking I turned it upside down (don't ask - long story), forgetting that it didn't have a closed top. Yes, a full container of dirty brown poo water poured all down my bare legs and all over the just cleaned carpet.

I almost calmly went and cleaned myself up, then went back to the carpet, again. This time it almost seemed worse to me, because it was in water form that quickly and easily seeped deep into the carpet. I'm still pretty grossed out by it, but what do you do? I cleaned it up the best I could, and was pretty much done when three year Jared came in with a huge smile on his face and said, "Mommy! I'm helping you!" Oh no. He had gotten the air freshener I had used in Ben's room and had thickly sprayed it on the wood floor in the entry and kitchen and was "mopping" it up with his toy mop. Big smile from little boy. "When Daddy gets home I'm going to tell him I was helping you clean!"

All of this, and it's only 8:15 a.m.

With no time left to clean any more messes I loaded Jared up in the van to take it in for the safety and emissions (on the last day of the month). I had to go to a certain place because we had purchased it already online to get a deal. Well, I get there and find out that their system is down, and they won't be able to do my inspection that day. Yeah, figures. So, I have to take it back in on Saturday, early. I get up Saturday morning and am there bright and early at opening time. One of the workers shows up on time, but for some reason he hasn't been given a key to the building, so we have to wait for another worker to come. So we wait, and wait, and wait. Finally, half and hour later, the other worker shows up. They do the safety and emissions on my van, and then say that the sticker is already on it. Huh? Plus, it's a 2009 and didn't need to be done this year. Say what? And then it dawns on me. All of that, and it wasn't even the van that needed to be done, it was Jerry's car.

Back from school

He did great!

He was all smiles when he came out. Mrs. Kerr said he did great and Mrs. Snarr told us they communicated really well. By asking questions she was able to gather that Ben has a sister and a brother. Considering that was the first time she really interacted with him, that's a lot!

Ben's teachers have been incredibly accommodating and it's easy to see they love their job and the kids. They are truly a blessing in Ben's life.

He came back from school a bit tired, but he ate his lunch and is now going down for a nap. He loved school.

So, first day of school a complete success!

Jerry

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!

Good News

I am very happy to report that Ben is doing much better, and is getting some of energy and smiles back! This last treatment was hard, but he seems to be through the worst of it, and doing better by the day. We are starting his therapies back up, and are very excited to see how much and how quickly he will be able to progress from here. Yeah, Ben! :)

Thank you all so very much for all of your prayers in his behalf. I have no doubt at all that they are being answered!

Home

What a long week and a half it has been. In and out of the hospital (but mostly in), being away from home and family, stuck in the same room for days, not sleeping well at night because of important but annoying hospital beeps and interruptions, trying to find something new for a very bored five year to do. Did I mention missing home and family?

Ben is doing better, but his counts are still quite low (0.4 white cell count, 37 platelet count, .2 ANC - all of those are extremely low), and he continues to have very little energy (and his mom is pretty darn exhausted herself). He looks pale, partly because of feeling so sick, but also because he's once again lost his hair and most of his eye brows and eye lashes.

On a positive note, the nausea is a lot better. We still have Ben's food running lower than usual, but he is only throwing up once a day, which a big improvement.

So, this last chemo treatment is making it's influence felt. We are so grateful that we don't have to go through another one. I'm not sure that any of us could have made it!

Thank you all so very much for your supportive and loving comments, your help, and as always, your prayers. I truly don't believe we could have made it this far without all of you!

Back in the hospital

Well, here we are again. First, Ben came down with a fever Friday night, and since his immune system is at zero, we were automatically admitted to the hospital. We spent the weekend here, but his fever was gone for at 36 hours, so they let us go home Sunday afternoon.

Ben has continued to be very nauseated. The nurse told us that having zero white blood cells can do that to you. Then yesterday, right before his sister's 10th birthday party, he got a fever again. He still was neutropenic (zero immune system), so they told us we had to bring him back in right away. Don't wait for the part to be over, don't pass go. Grandma very kindly brought him up last night so we could help our 10 year old feel loved, and then I came up and spent the night.

Ben's fever continued through the night, as well as his nausea. I was talking to the doctor this morning, and they want him to go 24 hours without a fever while on antibiotics (they have him on three), then they will take him off, and they want him to go another 24 hours without fever after that before we can even talk about going home. So, it looks like we'll be here until at least Thursday afternoon, if not longer. Please continue to keep our little guy in your prayers!

Our Sick Little Ben

Well, this last chemo is going out with a bang. For some reason it has made Ben really sick. He has been throwing up quite a bit, and has zero energy - probably partly because I can't run his food over about 15 mLs an hour (which equals about 15 calories). Not a lot of food for a whole day. On top of that, his blood counts came in as low as they have ever been. His red count is almost low enough for a transfusion, and his platelets, which are usually around 120 after he has had chemo, came in at 35. If they drop much lower he will have to receive a platelet transfusion. On top of that, he is neutropenic, which means his immune system is at zero. That alone can make him feel awful. All of that together makes for one sick little boy. He hardly moved all day yesterday, and today isn't much better. Poor little Ben!

But, a couple of weeks from now his counts will be back up, and he will have more energy and be able to have more food pumped in. I just hope those couple of weeks don't feel too long to him! Please remember to keep in your prayers, and thank you for them!

Ben's Last Chemo Treatment

Well, Ben is home after having received his last chemo treatment. I have very mixed feelings going on inside of me right now. On the one hand, I am so incredibly happy that he is DONE. No more chemotherapy! We really felt like this day would never come, yet here it is.

On the other hand, I feel emotionally battered. As you can see in the picture, Ben had a very hard time with this treatment. I took this picture as we were getting ready to go home to show how he looked at the end of his last chemo treatment. Ben really had a rough few days, he wasn't even close to the happy smiling boy he usually is, and he will continue to feel awful for a few weeks. No one should ever have cancer, especially not an innocent four/five year old boy. My mommy heart just feels very sad for my sweet boy right now.

We still have a lot of work ahead of us, and Ben truly works hard, but the worst of it is over. Now our little guy can concentrate on feeling better and rehabilitating his body and brain. We'll continue to keep you posted from time to time as there is news to share.

Again, thank you for your love, support, and prayers. We are forever grateful to you all.

Horse Riding Therapy

Even though he doesn't look like it in this picture, Ben had a great time riding his horse. It was a lot of really hard work for him, both mentally and physically. When we asked him if he had fun, he nodded his head "yes," and then made the sign for "home." In other words, "Yes, I had a great time, now take me home and put me in bed!"