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!

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.

All Smiles for our Adventure Walk activites with HopeKids

Two thumbs up for HopeKids Adventure Walk!

Adventure Walk

Thank you so much to all who supported our HopeKids Adventure Walk team! We earned $445 for HopeKids, and since that was matched by a sponser for HopeKids, we netted $890!!! As you can see, Ben had a wonderful time!

A Very Long Night

Well, we almost made it five weeks without having to take Ben to the hospital. Almost. We've had the flu going around our family, and for the rest of us, we just feel sick. Ben ends up in the hospital. He started throwing up Sunday night, and kept feeling sick on Monday. By Monday night he had a fever, and we had to run him up the emergency room (standard procedure when he has a fever). We didn't get there until after 9:00, and the ER was just full of kids. I knew we were in for a long night. They got Ben right back and got him started on an IV to keep him hydrated, but we didn't even see the doctor until after midnight. I didn't sleep much on Sunday night because I was up with Ben, so the later we got in the night at the ER, the more exhausted I became. Finally at 1:30am I went out and told them they needed to make a decision about whether they were admitting him or not, because I was getting too tired to drive home. They decided they were going to let him go, but by that point I was so tired I could hardly see straight, so they had to admit us anyway. By the time we finally got up to our room it was 3:30am. I had to get Ben settled, and by the time I finally laid down it was a quarter to four. But then I was so keyed up I couldn't fall asleep (and the fact that I was laying on one of those awful bed chair things really didn't help much). I finally fell asleep sometime around 4:30am, only to be woken up at 5am from Ben crying because he wanted to go home. I got into bed with Ben, and then I think we both finally slept for a couple of hours.

The happy news is that Ben is feeling much better. Now we just need to keep him healthy for the rest of the winter, somehow.

Get Blog Updates Via Email

Hi Everyone! Well, it took quite a while, but I finally figured out how to let you all know by email when I've made a new entry to the blog. Look in the top left corner of the webpage and you will see, "Subscribe Via Email" and below that the link, "Subscribe to Little Buddy by email." Click on the link, enter your email address, type in the red security word, push the subscription button. You will get an email asking you to verify that you really did subscribe to the blog. Respond to that email, and you are set to go!

He speaks!

So, the other morning I'm lying in bed when I hear a little voice calling "Mah-om" through the monitor. At first I think it's Jared, still feeling very groggy, calling me. Then I realize the sound came from Ben's monitor, not Jared's! Well, of course I jumped right out of bed and ran in there to find a very happy, smiling Ben. I was so excited!!! Apparently, Ben and daddy had been practicing saying "mom," and for some reason it just all clicked that morning. He still does best saying it first thing in the morning before he has a chance to over-analyze it, but I'll take it any what I can get!!!

Another happy bit of news, Ben isn't throwing up as much! He went three whole days in a row last week without throwing up! Then he got worn out from going to the zoo (very fun!), and it took him a few days to recover. He is only throwing up once a day right now, first thing in the morning. A big improvement to be sure. It looks like his new medicine for the rumination syndrome is finally kicking in.

So, in all, we've had a couple of good weeks, and some things to be very grateful for!

Show Me a Sign

Ben has been learning American Sign Language (ASL) by watching Signing Time DVDs, and he is starting to be able to initiate communication with us. He is a smart little guy, and is catching on quickly. He likes to show us what he has learned. It is wonderful to see! Daddy and I are going to take an internet ASL course so we can become fluent in ASL. That way we can "talk" to Ben in sign language and help him to learn it even faster. We are excited about it, and can't wait to really start communicating with him again.

Ben also still has his cute sense of humor. He loves to tease us. There is a story that I read him when he was younger where a girl got dressed putting her socks on her hands. His latest thing is that he likes to take his socks off and put them on his hands pretending like that's where they go. He gets a cute smile on his face and a twinkle in his eyes. He's still our sweet little Ben.

Raising Money for HopeKids

Hi Everyone,

We are a part of an organization called HopeKids. HopeKids has been a wonderful part of our lives since Ben got sick. Their purpose is to provide kids with potentially life-threatening illnesses with ongoing actives to give them something to look forward to - something to hope for. They are a wonderful support community for the whole family, and especially for these very special children. "There is no medicine like hope, no incentive so great, and no tonic so powerful as the expectation of something tomorrow," - Orison Swett Marden. We are so grateful for all HopeKids has given Ben and our entire family. Because of the economy, HopeKids doesn't have the funding they need, so we are walking as Team Ben in a fundraiser for Hopekids so they can continue to give support and hope to all the children in the Salt Lake area who need it so much.

To get a better understanding of what HopeKids is all about, you can watch this brief video (pay special attention at about minute 1:56/1:57!): http://theoldhamfamily.com/hopekids-video

If you wish to donate to HopeKids through Team Ben (even $5 makes a difference!), you can do so here: http://www.active.com/donate/uthopewalk/JBlanco143

This is our medical paperwork from the first seven months. What will it look like another six months from now???

Fourth chemo treatment

We spent much of last week at the hospital getting tests preparing for Ben's next chemo treatment. Chemotherapy can cause hearing loss, so he has frequent hearing checks. So far so good in that corner. He also had another MRI to make sure none of the tumor is growing back, and everything looks good there, too, for which we are very grateful.

Ben just got back yesterday from having his fourth of nine chemo treatments. It was one of the tough ones, and he spent a lot of the night throwing up and feeling sick. He doesn't feel well again today. With this treatment that he has, it is a good week before he even starts feeling better again, and two weeks before he really feels okay. We're keeping him on a constant anti-nausea regimen to help him do a little better.

Well, we have some news. Our Gastroenterology (sp?) doctor believes he has discovered the reason that little Ben is always throwing up so much. It's not a neurological problem like we feared, thank goodness. Instead it is a psychological problem called Rumination Syndrome that is very common in children who have had a brain tumor in the nausea center of the brain. Because Ben was so nauseated, he is now afraid that he is going to throw-up all the time, so he swallows, swallows, swallows, and the mental hype combined with all of the swallowed air actually makes him throw-up. Kind of a self-fulfilling prophecy, if you will. The syndrome isn't obsessive compulsive disorder, but it does act like it. We are being referred to a pediatric psychiatrist who will be able to prescribe a medication that will help brake the mental cycle, and hopefully in a few months he won't be throwing up every day anymore. Very happy news!

Hair today, gone tomorrow....

Sadly, I have to report that sweet Ben lost his hair again over the weekend. :( We were very surprised when it started growing back again, and were hopeful that it would stay, but not so. We have to be honest that we are very sad about it. Not because of how he looks, but because it is such a stark reminder of how sick our little guy really is.

On Friday, Ben had an endoscopy and biopsy of his stomach. The doctor found that both his stomach and esophagus are red and irritated from the throwing up. He also had a pH probe put in for 24 hours to measure acid reflux. We hope to have the results from it all by the end of this coming week. We'll let you know what we find out.

Tummy Troubles

Ben's blood counts are doing much better, and we were able to come home for a day or two, even though he still has a fever. However, we are going back today so that Ben can have some more tests done to try to find out why he throws up so much. He is going to have general surgery where they are going to scope his stomach to take a look and also to take a tissue sample. Then they are going to put a probe in his esophagus and leave it there for 24 hours to measure acid reflux. Hopefully all of this will get us closer to finding a way to help little Ben not throw up so much.

Still here....

Ben is really sick. He has no energy, and basically feels awful. They did an MRI to see if excess fluid in his head is causing the nausea, and that all looks clear, thank goodness. He still doesn't have any white blood cells, and he has been throwing up much more than usual. They called the G.I. specialists, and they are going to order some additional tests to see if he has pancriatitis, an ulcer, do studies of his esophagus, etc. They said that it could be long term damage to the nausea center from the tumor, and if that is the case it will be very difficult to treat it. Sigh. They may decide to do all of that inpatient, or outpatient, and that will also determine when we go home. We'll keep you posted as we can.

Thank you for all of your love, support, and prayers!

Back in the hospital...again

Ben is back in the hospital today. He developed another fever, which was probably nothing. The problem is that his white blood count is at zero, which means he has no means of fighting infection, so they want to keep a close eye on him until his counts come back up and/or the fever is gone. He also is really low on his red blood cells (he's at 21), so they are going to give him a transfusion today. He's pretty nausiated, and has already thrown up about five times this morning. Not a good day in Ben Land, as he used to say.

We hope to be able to go home tomorrow, but we'll have to see. I wish, wish, wish Ben could be feeling better, and we could just go home now. It's getting harder and harder to be here. I hate seeing Ben so sick, and I miss my other little people.

What's in a name?

Given the following precedents:

1) The KSL Primary Children's hospital interview (where they called him Benjamin Blanco),

2) the 'Song of Love', where they say "Everybody loves you, Ben Blanco"

we have decided to drop the 'Little Buddy' thing, since his name is the worst kept secret, along with Watergate, Superman's secret identity (just in case: he's Clark Kent) and Tom Cruise's love for whatever his wife's name is (he shouted it while jumping on a couch, remember?)

So, let me say:

Ben, Ben, Ben, Ben, Ben, Ben, Ben, Ben, Ben, Ben, Ben.

Sincerely,

Gerardo Raul Blanco Sosa, Social Security Number: (well, let's not stretch it...)

Ben's Song of Love

We recently discovered a wonderful organization called the Songs of Love Foundation. It is a not for profit group of volunteer singer/songwriters that write a personalized song for children with potentially life-threatening conditions. We requested a song for Ben, and it came a couple of days ago. For a small $0.99 donation (which goes to help provide songs for other kids - it costs quite of bit of money for each song written and recorded), you can download an MP3 of Ben's song.

If you would like to download a copy, go to: https://qs1322.pair.com/songlove/store/child/
and scroll to the bottom of the page. In the "Child's Last Name" field type Blanco, and in the "Child's Record Number" field type 19510.

Ben LOVES his song!!! His face and eyes positively glow every time he hears it!

Happy listening!

Ben's chemo treatment went well this time. He only threw up once, and he got lots of good naps and sleep. He was happy and smiling this morning despite having a fever (yes, again!), but they aren't going to keep him longer due to the fever since he is so doing so well in every other way. So, he gets to come home today!

Dad reported that last night he was "counting" with his nurses, and he very clearly mouthed the word "nine." He is getting closer and closer to talking again all the time. He works so hard at everything. No one could love that little boy more than we do!!!

Standing!!! (Leaning on Dad, but still...!)

"Riding" his scooter again for the first time

Okay, I deserve 10 lashes with a wet noodle for taking so long to update the blog. But, at least I'm doing it now, right? :)

Our sweet Little Buddy has been sick for over a week now with a fever and with really bad diarrhea. He spent the evening of the 4th of July in the ER trying to figure out what is wrong. They've been doing tests and things, and we are closer to getting an answer. They think he has something called "C-Diff." He's had it before, and it is miserable stuff. They put him on the medication for it just in case, but we won't find out for sure if he has it until tomorrow (Saturday) morning. In the meantime, I think I've done more laundry in the last week than in the last two months combined. And our poor little guy is feeling pretty bad. Not fun stuff.

We have set up In-Home Preschool with Alpine School District, so he has a teacher coming in once or twice a week to do preschool with LB, and he is absolutely loving it! The district has been so fabulous to work with, and by the end of the summer we'll be having a preschool teacher, physical therapist, occupational therapist, and speech therapist all coming in once a week - and we don't have to pay a penny for it! It's all part of their early intervention program, and it is all funded by the government. It is a wonderful program that we are very grateful for!

Next Wednesday LB goes in for his next chemo treatment. This one shouldn't be quite as bad as the others because he is getting drugs that won't make him feel as sick. He'll have to be in the hospital longer, but overall it should be better than the last two have been. I promise to update the end of next week and let you all know how the chemotherapy went. :)

Done with the Swine Flu

I am very happy to report that we are now Swine Flu free! LB did catch a mild case, and spent an evening in the ER, but for the most part he was fine. A HUGE blessing!

LB is doing okay. He has been nauseated again quite a bit, but that is a problem we will be dealing with for a long time, I think. He has a very strong desire to start eating, and can get down a few spoonsful at a time, but the mental effort it takes to eat wares him out quickly.

I used to think that all we had to do was make it through chemo, and then he would be better, but I've come to the realization that even after that we have a long way to go to get our little guy walking, talking, and eating again. I had a dream the other day that he was back to full health, talking and walking around. It was wonderful! I wish that dream were a reality right now, but I'm afraid it will be a few years before it is. But as hard as it is for me, it has to be even more frustrating for him to not be able to communicate the way he wants to. We have been working on ASL, and that helps some, but I know that there is so much more he would like to be able to do and say, and just can't. Someday.

Swine Flu Hits Home

Yeah, so, our 1 year old tested positive for Swine Flu today. He is through the worst of it, and it is too late to start him on the vaccine, so we'll just have to plow through it with him, unfortunately. Luckily, LB hasn't gotten it yet, but the flu has an incubation period of up to ten days, so we're not out of the woods yet. We have a call in to PCMC to see if they want to put him on a preventative vaccine. We are really hoping he doesn't get sick!

Second Chemo Treatment

Our sweet boy had his second chemo treatment late last Thursday/early Friday.  He did so much better this time than last!  Something I was very grateful for.  He didn't get nearly as sick or nausiated.  What he did get was a super cool new cow flashlight to help make his chemo stay a little happier.  It is a cow with a flashlight inside of it's mouth.  When you pull the handle on it's back, it's mouth opens, the flashlight turns on, and it moos.  What more could a little boy ask for?

Even though the treatment went better, little buddy is still nausiated enough that he can't tolerate his food, so we have him on IV fluids to keep him from getting dehydrated.  The nausia usually lessons after about 72 hours, so we are hoping he will feel even better tomorrow.

Hangin' with George

Dinner!

Little Buddy did great on his swallow study! He can have pureed foods, so this is his first time back at the dinner table. Does he look excited? :)

Ben on YouTube!

Here is YouTube link to Ben on TV.  I'll post the video directly to the blog as soon as I find out how. :)

http://www.youtube.com/watch?v=uwOO3VJICCE

TV mixup

Sorry for those of you who missed LB's TV debut!  The paper that we were given listing the time he would be on was wrong.  (The person in charge felt VERY bad!).  He was actually on at 12:45.  But we have a great friend who was able to make a digital copy of it, so we will post it on the blog as soon as we have it.

As for LB's state of health, he spent most of the week last week in the hospital.   He had three separate blood infections, two of them quite rare.  But he is home on IV antibiotics, and we are still on schedule for his second chemo treatment this week.

Little Buddy will be on TV!

Our sweet LB is going to be on TV on Sunday for the Primary Children's Telethon.  He will be on with the person who has been doing his music therapy at the hospital, and she will be talking about what a difference music therapy has made for him.  He'll even be doing a little bit of therapy with her on the telethon.

The telethon is on Sunday, May 31st on KSL channel 5.  LB will be on for about 3 minutes sometime between 11:00 - 11:45 am.

Just thought you'd all like to know!

Little Buddy definitely has the infection in his blood, so we are here at the hospital for at least the next 48 hours while they confirm whether the antibiotics have cleared it. Unfortunately, the infection may be hanging out in his central line (where he gets his IVs and Chemo), and if that is the case the line will have to be replaced. That will mean general surgery and an even longer stay for us. Needless to say, we hope that won't happen.

LB has been really enjoying his ice cream lately. In fact, he has been eating so well that he will go in for another swallow study tomorrow to see if he is ready to eat more foods and more calories every day. We have been hoping and praying for this, so wish us luck!

Update: On 5/24 we brought LB to ER because his temperature was high.
They did a bunch of blood cultures, tests, etc. and decided to send us home: the cultures take 24-48 hours to come back with anything.
We went home on Sunday evening. We made it right in time for Dad's birthday, and surprise surprise, he ate about 3 tbsp of icecream. He actually swallowed the whole thing!
He had a great Labor's Day with family and we went to bed happy and content.
Now, please allow me an egotistical note.
Today is my birthday, 5/26. So, to celebrate, the hospital called us at 1:00 AM and asked us to bring LB in immediately because he has some bacteria of the Graham Negative family growing in his blood. That's weird name for "bacteria that makes you very sick if not treated".
So, for my birthday I turned on the hazard lights, and drove from PG to Primary Children's in 30 minutes. Talk about a good bday present! :)
We made it to the hospital and by 3:30 AM we were already set up in our room, and went to bed. LB has a bit of a fever. They did another blood culture and now we have to wait 24-48 hours in the hospital to know what's going on and how to treat him. So, tonight, we're having a small bday party with the immediate family at the hospital room. How fun is that?

I'll let you know how LB progresses.

Thanks your continuing support and prayers on LB's behalf!!!
LB's dad.

He means the dog doesn't poop in a box, not LB.  Just wanted to clarify.... :)

One problem

He doesn't poop in a box. :(

George is here!

Hello Family and Friends! We are very happy to announce the arrival of the newest member of our family: George! He is Little Buddy's new poodle, and LB is very happy to have him! We got him from Stonehill Kennel in Connecticut, and he is just a wonderful dog! He is fully trained (a must with our life the way it is right now!), and has a very sweet, playful, loving personality. LB just loves him! I flew back to CT a week ago to learn his commands. It was a good trip, but I missed my little family and was very happy to be home again. George has integrated very well into our family. We can tell he will be good for our sweet LB. Dogs are often used for emotional therapy, and also to help sick individuals cope with their illnesses. George is great at getting LB to smile and laugh, and that in itself can be the very best medicine!

On a less happy note, LB spent several days in the hospital this past week with a high fever. It started out as a urinary tract infection, but the fever continued even after that cleared up, and the doctors still aren't sure why. We are back home now while we are waiting for some test results to come back. LB has had a low grade fever all day, but not as bad as it has been, which is wonderful. We will be keeping a very close eye on him the next few days, and hope we don't end up back in the hospital again.

I know we say this often, but thank you so much for your support, faith, and prayers. They make all the difference, and I don't know what we would do without all of you. I know without doubt that prayers are heard and answered. Thank you also for the house cleaning, meals, babysitting, etc. Most of the time I don't even know who has been here to help me, but that doesn't lessen my gratitude! I pray daily for blessings to be poured out on those who are helping us so much during this difficult time. My love and thanks to you all!

Quick note: Ben has a fever that won't go away. He has a urinary tract infection, so he's not as happy as usual; but that didn't stop him from having a good time here:

We enjoyed a good morning together, and he had a great time most of the time.

He might be going to the hospital this morning to see if there's any other source for his fever. We'll see.

Hello Everyone!
First of all: thanks for the prayers and support. LB has done really well with the chemo, considering.
LB has been doing a lot better. The chemotherapy was tough on him at first, but he is now mostly done with the throwing up and general feeling of desolation. He is smiling and enjoying life.
Big development: he's begun producing little voice sounds! A couple of times we caught an 'uh-huh' (for yes) in response to some question. The therapist said their last session was the best he's ever had. So, we're now stimulating him to produce more and more sounds.
We're also working on his balance by sitting him on a ball and having him maintain the balance there. We have fun playing the "Oh-Oh-LB-Is-Falling" game: I tilt him slightly while having my arms around him (holding his knees from behind), and he works on regaining his balance.
Another thing they taught us is that the brain manages the surroundings as divided through the central line of the body. So, if something is on the right side of his body, it's easier ("more natural" we could say) to grab it with the right hand than with the left. It takes more brain power to "cross the line".
When people get brain injuries, it's common for them to loose this ability to cross the line, and then, if you put something across the line and ask them to grab it with the "other side" hand, they will turn the whole torso to grab it.
The good news: LB has good "cross the line" ability right-left: i.e. he'll grab a ball on his left side with his right hand with very little effort. The opposite is a bit harder: he tends to rotate the torso to grab a ball on his right side with his left arm. But we discovered that his left side is weaker in most areas, so we're not worried. Actually, having this ability to cross the line is encouraging, when thinking about his future life: think how many times you "cross the line" in your daily life! (no pun intended)
One last thing: when helped to maintain balance, he will walk some steps! His legs are now strong enough that they can support his weight for a little while! If we let go he'll fall pretty quickly because his standing balance is not good yet, but his legs are strong enough, and that's progress too!
In short, he still has a long way to go, but he's progressing, and we are proud to see how much effort he puts into exercising, doing therapy, etc.
This week, LB's mom is getting a dog for LB. His name is George (Very Fitting: George as in G. Harrison!), and he'll be home on Thursday. It's a trained companion standard puddle, and we're very excited to have him come. He'll be a good friend for LB and will help with therapy, etc.
Thank you all for the continuing support and prayers and love. We've felt sustained by your efforts and prayers in our behalf.
Dad.

Our first chemo treatment

Unfortunately, things didn't go very well.  LB got really sick.  He didn't throw up a lot, but he was super nausiated, and just felt/feels awful.  They were giving him the medicine overnight, and the effects start right away, so I was up with him until he finally fell asleep at 5am.  Of course, he was back up at 8am, and then was not only sick, but super tired all day yesterday.  Late afternoon he started crying, and crying, and crying.  We called our Home Teacher over, and he helped give LB a blessing.  He finally fell asleep, and he is still in there sleeping.  Daddy was very kind and took the night shift so I could sleep.  I've decided that chemo is as bad or worse as radiation.  I guess the saving grace is that he only has it every four to six weeks instead of everyday.

My heart is sad for my little boy.  As he was crying I looked into his little face that was trying to tell me how sick he felt and it just broke my heart. :(

Happy days and tough days

Hi,
LB had a very good weekend. He's not throwing up as much (actually, he didn't throw up once yesterday(!)) He was very happy, smiled a lot and played with little bro and big sis.
I've been working with LB on his physical therapy. He is a champ. He does everything I ask from him, and I can tell he is putting his best effort. Every single time. We've been working on strenghtening his trunk, and he's able to sit straight now for indefinite periods of time (i.e. he doesn't have to lay down after 20 seconds)
This next Wed. (April 22) LB goes back to the hospital, to start his chemotherapy. He'll be admitted on Wed. and spend the night there. Hopefully, he'll be able to come back home on Thursday. It will depend on how tough the chemo is on his little system, and how well he takes it. I know I talk for Mom as well as me when I say that knowing this assault to his system is for his good doesn't relieve the sadness of seeing him going through it.

Please keep the prayers coming. He'll need them.

Thanks!
Dad.

No Explanation Needed

A Hard Week

Hello, Friends. It's been quite the week here in Little Buddy's household. The fun all started on Tues the 7th in the evening when his NJ tube got clogged again! After several failed attempts to unclog it, it was decided that we would once again be making the trip up to PCMC in the morning. The sun came up, and away we went. When we got there, his doctors and we decided that the best thing to do was to pull out his NJ tube (Mom got the very joyful honor) and move the surgery up for the insertion of his GJ tube. We couldn't get a surgery time until the next day, so we were kept in the hospital over night so he could be monitored and given IV fluids. Little Buddy had a very difficult night in the hospital. He was hungry and tired (having not "eaten" for 24+ hours and having only slept about 5 hours the night before), and just wanted to go home. LB was almost inconsolable, and he finally crashed from exhaustion after midnight.

Thursday morning finally came, and off LB went to surgery with his mom sure that all our feeding tube troubles were behind us. Sigh. Everything went fine with the surgery, but when LB got up to his room and we tried to start feeding him through his shiny new tube, guess what...yup, it didn't work. The surgeon said that everything had worked perfectly in the O.R., so we had to schedule time in Fluroscopy (a fancy word for a special x-ray) to see what was happening in the small intestine. And, you guessed it, they didn't have time in their schedule until the next day. Mom went home exhausted at this point, and dad went up there to take over. Once LB made it into Fluroscopy they found that the tube had turned onto itself and that was causing the block. They were able to fix it rather easily, and LB finally started getting food, almost a full 72 hours after his last meal. He got to go home Friday night, and couldn't have been happier to get there!

While LB was up at PCMC they did an MRI to see if there was any recurrence of his tumor. They did the MRI of his full brain and spine, and there wasn't a sign of tumor anywhere! Very happy news, to say the least!

Another bit of happy news is that LB got to go back to church for the first time on Easter Sunday. He was so excited to go!!! And everyone at church was equally excited to see him there! He just loved it!!

Unfortunately, the joy was short lived. After church was over LB started throwing up again, and again, and again. It got so bad that mom and dad decided that he needed to make the trip back up north, again. The docs decided that he maybe had a slight infection from his GJ tube and put him on an antibiotic that seems to be doing the trick. He only threw up once today. We're praying that trend continues.

To top it all off, mom got very sick this week, and was flat in bed for almost 36 hours.  I'm starting to feel better now, but man, that was a bad one!

So, hopefully, we have a bit more of a break before LB goes in for his first chemo treatment next Wednesday. We have a year of treatments ahead of us, but we are trying to take them one at a time. As frustrating as all of these experiences are, we can't help but be so very grateful for the technology that is helping to keep our little boy alive. But, of course, most of the help is coming from Above, and we are more grateful for that than anything!

Our Little Buddy has been doing well this last week.  He didn't end up having an infection, so we didn't have to go back into the hospital (yay!!!).  While he is still tired from his radiation treatments, his nausea seems to be subsiding.  He is only throwing up once, maybe twice a day, at the most.  A wonderful thing, we assure you.

He continues to have his various therapists make home visits.  He is doing well with his therapy, and is trying so hard to get back to where he used to be.  He loves to sit up these days.  We try to get him to lay down to rest, and "pop!" up goes LB, sitting up again.  We literally can't keep him down!

We are eagerly looking forward to next week when he gets his J-tube in and gets his nose tube out.  We are hoping that he will have more interest in swallowing when he no longer has a tube running down the back of his throat.

We are learning that so many things in the body are directed by the cerebellum; muscle coordination, swallowing, speaking, etc.  Our doctor explained that the delay in these things coming back is due to LB's cerebellum having to re-establish the connections.  The brain, of course, takes its own time to do things, but our doctor believes that these things will eventually come back - if not completely then mostly so.  So, we just need to keep on the therapies and be patient waiting for LB's brain to do things in it's own way on it's own schedule.  He has already done everything he wasn't supposed to be able to do again.  He is our little miracle boy!

Back Home

Our sweet little guy is back home and resting in his own bed.  They still aren't sure what is causing his on-again/off-again fever, so they are doing some bacteria tests to try to figure it out.  Those tests take between 24-72 hours for the results, so he is home until they find something definite.  If there is an infection he will go back to the hospital for some IV antibiotics.  Otherwise, maybe we'll get our little break afterall.

Short Lived Joy

We had a wonderful day on Friday, with LB feeling very positive about being done with the "nap doctor," then at bedtime his NJ-tube (feeding tube) got plugged.  We worked and worked and worked on it with no luck.  At about midnight we gave up and decided to try again in the morning.  If it didn't clear pretty quickly we would take him up to PCMC.

At around 3am, mommy was awaked by a crying LB.  I went into his room to try to concole him, with no luck.  He had only had about 300 calories the day before because of his radiation therapy, so he was really hungry.  I was exhausted and tried to get him to sleep, but with no luck, so I went to work on the tube again.  At 4:30am I asked LB if he wanted to go to the hospital to have his tube fixed and he gave me a big smile and nodded his head "yes."  So, off we went.

We had quick a wait in the ER because we obviously weren't the most urgent case there, and about 8am the doctor came in to see us.  They wanted to try getting the tube unclogged themselves.  No luck.  So we made the decision to put a new one in.  It is really painful for LB when he gets a new tube put in (that's why we all worked so hard to avoid that), so I asked if they could please sedate him.  They couldn't do that, but they did give him a drug called Verced which is very relaxing and causes him to forget the whole experience.  With that in his system, things went very smoothly.

Until they didn't.  When LB was hooked up to the monitors before he was given the Verced, we noticed that his heartrate was elevated - up to 150.  We thought it was because he was in pain with a headache, he was dehydrated, and hungry.  We figured it would come back down after he got some food and painmeds.  We placed the tube, and then waited, but his heartrate went up instead of down.  It got as high as 170 at one point.  Because of his history with his heart, the decision was made to admit him.  As the day went on his heartrate bounced around between 140-155ish, and he developed a fever.  We thought he might have Strep like his big sis, but that came back negative.  So he is still there this morning.  His heartrate this morning is still around 140, but his fever is down.  Dad is up there right now, and he is waiting to talk to the doctors to decide what we'll do from here.

So, we thought we were going to have a two week break, and we didn't even get a 12 hour one.  Little Buddy was seriously bummed to be back in the hospital yesterday.  He was upset about having to stay and wanted to come home.  Who can blame him?  We were all so excited to do done with radiation, then Wham!  We're all very discouraged by it, and are feeling that life just isn't fair.  (Isn't that something that you only say when you are 8?  Apparently not.)

Graduation Day!!!

We are all smiles today, because Little Buddy had his last every Radiation Treatment this morning!  LB is super excited that he doesn't have to go to the "nap doctor" anymore (called that because from his sedated point of view he went there every morning to take a nap).  He has been very fast to smile all morning, and you can see in his eyes how happy and excited he is.  I really get the feeling that he understands that he's crossed a difficult barrier, and he feels more positive about things than he's felt in a long time.

As LB arrived this morning the nurses were waiting with "graduation" presents for him.  He got a new blanket, a bear, and a graduation certificate. (Mom and Dad also got a graduation present for big sister and little brother for being so patient with us being gone so much.)  LB, as always, won over the hearts of the nurses and doctors at the Huntsman Caner Institute, and there were even tears shed by them as they had to say good-bye to their little friend with the bright smile and beautiful eyes.

It will take him a couple of weeks before he starts to feel better from his radiation therapy, so he will still be nauseated and tired for a while, but he should be feeling somewhat better by the middle to end of April.  It has been a long six weeks going up there everyday, and a long month before that up at Primary Children's so are glad to have a four week break before LB starts his chemotherapy treatments.

So, looking ahead for the next month, LB will have to go up to PCMC on the 9th and 10th for some tests (MRI, hearing tests, kidney test, etc), and then the week after that we are going to take him to get a more permanent feeding tube put in his stomach (called a J-tube).  He still is having a difficult time swallowing, and putting a tube in a J-tube will be more comfortable for him, and won't get pulled out nearly as easily as a nose tube (his current NJ-tube) does.  They will give him a couple of weeks to recover from that, and then the first of May his chemo will start.

So, we are happy today and are looking forward to a bit of a "vacation" this next month.  We'll continue to keep you posted week by week and let you know how he's doing.

Hi, Everyone!  I have a little down time with the kids in bed early, so I thought I would take a few minutes to update everyone on how Little Buddy is doing.  Overall, he is doing well, but as he gets closer and closer to finishing up his radiation treatments, he gets more and tired/sick.  Radiation treatments are cumulative, so the longer you go in the treatments the more your body reacts to them.  LB took a three hour nap today, and still wanted to go to bed at 6:30pm.  He remains nauseated, throwing up several times a day, and his skin is getting burned from the treatments.  We are having to put a special cream on his head and ears that is used for burn patients.  His skin is red and peeling as if he had a really bad sunburn.  It is sore and it itches quite a bit.  He isn't quite as quick to smile these days, but thankfully he only has six radiation treatments left.  Then we get a break for a few weeks before he starts his chemotherapy.

Probably the biggest highlight of the week is how well LB is doing with his physical therapy.  He is his own therapist, and he works hard everyday to be able to do the things he wants to do.  At this point he can sit up by himself from laying down using only his stomach muscles (I wish I could do that!) and then is able to balance and keep himself up for up to 30 seconds before he goes "Plop!" back down again with a big smile and laugh.  He thinks it's hilarious when he falls back down!  As soon as he falls he is working to get right back up again.  That's our little fighter!

As for Mom and Dad, we are also very happy that radiation is over after next week, because we are getting pretty worn out ourselves.  After being up at 2:30am every morning to shut off LB's food and give him his medicine (and then often being stuck with him in his bed the rest of the night because he is awake and feeling sick and insecure) we have to be up at the Huntsman Cancer Institute by 7:30am every morning.  It's given us new sympathy for those who commute every day!  We'll all be very happy when next week is done!

Good week!

Hi everyone!

LB is doing great, after some minor problems.

On Monday, his feeding tube got yanked out accidentally, so on Tuesday morning he had to have that thing stuck through his nose down to his Jejunum again. He cried a lot because that's a painful thing, but his tube now goes down his other nostril, so he can go back to sleeping on his right side, as he always did.

On other news, he's done with the radiation down his spine, so they're restricting the radiation on the area where the tumor used to be. That should help with his nausea because they will not radiate his guts anymore.

LB is getting stronger by the day. He's now able to almost sit up by himself if we hold down his legs, and he's not wobbling his head so much anymore. In fact, he holds it very well, keeping it under control for several minutes before getting tired.

Most important, he is still not able to swallow, but he's starting to remember how. That is very good because in our doctor's visit yesterday we learned he lost 2.2 kg. That's because he's not getting enough calories through the tube. We're increasing his food dose but the best solution would be for him to have a stake with mashed potatoes... :)

He is in good spirits, and playing with Sis & Bro definitely helps. The three of them have the best time rolling on the floor and climbing Mount Daddy. ;)

Again, thanks for all your help, food, time, house cleaning, and random acts of support. We couldn't do it without all of you!

Bald Buddies

Happy 4th Birthday!

Hello All,

First of all: One of our friends (no names on the blog... :)) offered to "send some emails around" to gather some $ to help us pay for his bath chair and prescriptions. We received some of it Friday. We are overwhelmed and touched at your generosity and desire to help us. Words can't describe how grateful we are. Please accept our deepest appreciation, and may the Lord bless you all for your sacrifice in our behalf. He has blessed us by extending the gift of friends like you to us. Thank you!

Next:

This last weekend has been very eventful, but with the wrong kind of events...
Radiation is starting to get to LB. He is more nauseated (he threw up 8 or 10 times on Saturday).

Saturday at 11PM we called the on call oncologist (try to say that 10 times fast: "call the on call oncologist": it sounds funny), who sent us to the ER.

I drove LB to PCMC's ER, where they performed all kinds of studies. As a doctor put it: when a neurological surgery patient starts throwing up, we get worried. They kept us in the ER for a couple of hours and then admitted us to the hospital: the oncologist on call wanted to keep him in observation to be sure everything is fine: we finally fell asleep at 3AM or so. (Another night on the couch... :))

The good news: his brain looks OK. His brain ventricles are normal size. (Funny moment: while looking to LB's MRI, I asked the doctor: "This gaping, cavernous hole here at the back of his head: is that a ventricle?" The doc answered: "No, that's where his tumor used to be. It's now filled with liquid, but eventually the brain might reclaim some of the vacated real estate" Ha!)

The other good news is that his feeding tube is very much in place: it's well into his jejunum, so all the pulling and pushing has not affected that. In fact, it was so deeply in that they pulled it back a little! (Good because then we got sure he didn't have any loops in his nose or anywhere else).

They did some other studies and concluded that LB is throwing up because of the radiation. Which is expected but not accepted or settled for. The oncologist mentioned that the fact that we expected him to be nauseated doesn't mean we can't work to make it better. So, she prescribed a different lineup of drugs to see if that makes it better. We'll see.

So, he's good. His emotions are a bit raw, but that's because of lack of sleep + benadryl + nausea: temporary conditions.

He's now entering his Week 3 of 6 of radiation, so Wednesday we'll be in the middle of his treatment.

Those are all the news for now. Again, thank you all for your prayers and sacrifice on our behalf!

So long no see...

Hi,

so, yes, I (Jerry) have taken over and I'm already late on my first posting. Sorry about that: life insists in taking over my free time. :)

First: we celebrated little buddy's birthday the other day! He turned 4. It was a happy party, with everybody there, and he got a bunch of presents and tons of love from everyone. He was sincerely happy, and I could not resist the fleeting thought that a possibility existed that we wouldn't have that party. How grateful we are to a loving Heavenly Father that allowed us the privilege of caring for Little Buddy longer!

Little buddy (LB from now on) is doing great. He's developing more strength and purposeful movement. He's now able to move both arms, wave goodbye, and (with some work) pass objects from one hand to the other. That is important because it means he's being able to manage two extremities simultaneously--big win there. He's also holding his head straight for longer periods of time. He remembered how to lock his knees, so he can stand for a few seconds with help for balance. And, lastly, he is now able to lift his bum from the bed when lying on his back: his hamstrings and gluts are getting stronger.

We have now (thanks for the idea, Uncle J!) a rudimentary system of communication: we ask him a yes/no question and he answers by giving us a thumbs-up if the answer is yes. He has added an element of emphasis to the thumbs-up: when he really wants something, his thumb comes up faster!

He has taken 8 doses of radiation and started his chemotherapy last week. He's taking one of four or five drugs right now, called Vincristine. This drug help the radiation be more effective, and that's the reason they give it along with it.

LB has been throwing up more than usual, but that's a known side-effect of the treatment. We're giving him a new medicine to avoid nausea starting today or tomorrow, so we'll see how he goes with that.

Also, he's taking his swallowing test today. If he passes (he needs a C+ or better.........just kidding) then we'll start introducing food by mouth. That's VERY exciting, because he'll start exercising those tongue/throat muscles more, and that might help his speech recovery too.

Most important: through this all, he's been happy. He gets frustrated sometimes, but besides those rare moments, he is our happy, smiley boy. He has been an example to all of us about how to be happy regardless of opposition. He is a living reminder that circumstances are what we make of them, and that we can decide how to face them and feel about them. Talk about lemons and lemonade!

Thank you all for your continuous support and prayers, your meals and your time, your sacrifices and empathy. Our trial has been more bearable because of you.

May the Lord bless you according to your generosity, sacrifice and concern in our behalf.

Us.

Home!

Our Little Buddy is home!  He is so happy to be here!  And we, of course, are so happy to have him back with us!  It is a lot of work, especially for me now that I'm nurse/therapist/mom, but it is worth it for him to be home.

We still have our ups and downs.  Some days go better than others.  Little Buddy has an eye infection today that is really bothering him, and he is starting to feel the effects of the radiation treatments, and has been sleeping most of the day.  It will be a long hard six weeks, then a break for about four weeks, and then back up to Primary Children's for his first chemotherapy treatment.  It's not going to be an easy year, but all the love and support we are receiving from wonderful friends and family, as well as from above will help us make it through.

I've made a hard decision that I have been agonizing over for a few days.  I am turning the blog over to my husband, who plans to update it every Sunday.  As Little Buddy gets sicker and sicker from his radiation treatments, I am getting more and more sad.  With my mother feelings so close to the surface it is being hard for me to post on the blog.  I hope all of you understand.  I will still probably post from time to time, but will leave most of it to "Daddy."  I want you all to know how very much I appreciate all of the faith, prayers, and love you have sent out way.  It has made all the difference in the world!  Thank you all so much!  Love, Jana

Going home!

Sorry it's been so long since I updated this.  We've been pretty busy!  Little Buddy did settle in to his new room, and has begun to like it here.  The nurses are wonderful, and his room is more private and quieter.   That has been nice.

Our little friend started his radiation therapy on Thursday.  It is making him tired, and he has been feeling a little sick, but he still has his positive attitude.

The most positive thing is that we have been feeling that it is time to take our little buddy home.  It has taken a lot of work and planning, but we hope to take him home this afternoon.  He is still on his feeding tube and needs therapy, but that will all be done from home now.  Between home health, Aunt LeAnn (an RN), and a mom and dad who have a huge learning curve ahead of him, he'll still be well taken care of.  We'll also still be coming up for radiation therapy every day, but that's not anything we haven't been doing anyway, and we'll all have more time together as a family.  That will make all the difference for the whole family!

We'll still be updating the blog on Little Buddy's progress, but probably not everyday, as there won't be as much to tell. 

A funny thing that just happened: Little Buddy was laying in his bed here at the hospital, and he let out a huge sneeze.  He had a pool of saliva in his mouth that flew three or four inches in the air, and then succomed to gravity and hit him right in the face.  He started laughing so hard that his whole face turned red.  It was very funny and very cute.

So, hopefully, my next post will be from my computer at home.  Wish us luck!  :)

Tuesday

This was a bit of a hard day.  Little Buddy did well with his therapies, but then he got moved upstairs to the ICS unit (Immunocompromised Services Unit) where all of the kids with cancer and organ transplants are.  It is much better for him to be up here, because he will much better shielded from possible sickness that could really do him damage (especially since it is RSV season here in the hospital), but it was a hard move from both him and Mom.  It was a hard move for him because his room in NTU had become "home" for him.  He was familiar with the room, the nurses, etc.  When he came up here yesterday I could tell that he felt very nervous about the whole thing.  I took him to see the "big fish" and other things in the hospital he likes to see to try to help him feel more settled, but it only helped marginally.  I'm sure he'll be fine with things soon, however.

It was a hard day for Mom because going onto the ICS/cancer floor brought it home even more that we aren't here in the hospital just for Little Buddy to be getting therapy.  We are here for a much more serious reason.  As I saw the children here with cancer and the characteristic bald heads, I got tears in my eyes realizing that my little guy is that sick, too.

So, there are good days, and there are days that are a little bit harder, but that is just how it is when you or your child is very sick.  This was one of the harder days.

Monday

Today was another good day for our sweet little guy.  I was so happy when I got to the hospital this morning and his nurse told me that Little Buddy had stuck out his tongue on command.  That is the first time he's done it, and is a huge step forward in being able to eat and talk again.  Of course, after that news Little Buddy and I stuck our tongues out at each other quite a few times during the day! :)

During music therapy this morning, the therapist was purposefully trying to startle Little Buddy to see what his startle reflex was doing, and he startled right on que - again for the first time.  He did it repeatedly, so we know it was for real.  She said, "I can't even tell you what a good sign that is!"

When I was getting Little Buddy in and out of his wheel chair today for his daily ride and for his bath I told him that I wanted him to give me a hug.  He wasn't able to completely put his arms around me, but I felt definite pressure from him and I know that he was hugging me.  I loved it!

At the end of his physical therapy session today, he was standing (with a LOT of help from his therapist) and he lifted up his leg as if he wanted to walk over to me.  Again, with a lot of help, he "walked" over to me and gave me a hug.  He is working so hard to get back to where he wants his body to be!

Things continue to go in the right direction, and our little friend never fails to astound his doctors and therapists by the progress he is making.  And we couldn't be happier about it!  We are so grateful for the many prayers and the blessings he is receiving from above!!

Sunday

Little buddy got a visit from his great aunts today (Grandma's sisters).  They were excited to see that he is doing such a good job moving his head from side to side, as well as moving his arms and legs around.  He can't yet control his movements very well, but he is getting more and more active all the time.  Phyiscal and Occupational therapy are working hard with him to help his brain remember how to control his movements and get is body to do what he wants it to do.

Even though Little Buddy's body isn't doing what he wants it to, his mind is still as sharp as anything.  He laughs at jokes and the look in his eyes let us know that his mind is still working well. We were very excited when we opened a surprise package from Two Little Hands Productions yesterday.  Somehow they found out about our little boy, and they sent us a wonderful collection of "Signing Time!" DVDs and CDs as a gift to teach Little Buddy (and his mom and dad) American Sign Language, so he can get the words stuck in his head out and communicate with us again.  We can't wait!

I know I say this almost every day, but thank you so much, Everyone, for all you are doing to support and help our family.  Your love, service, gifts, and especially faith and prayers are helping us all in so many ways.  We don't know how we would get through all of this without you!