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!

Going for a Ride!

Little Buddy has really enjoyed getting out of his bed and out of his room for awhile to take a ride around the hospital in his wheelchair. He really enjoys going and seeing the big fish (painted wood fish on a track) that swim behind the elevators on the main floor. He loves that he gets a change of scenery every now and then!

Friday & Saturday

Our Little Buddy continues to have a very positive attitude and to work hard at his therapies.  On Friday, for his physical therapy, they put him on a slanted mat, and rolled him down the "hill" into some big plastic bowling pins.  One of Little Buddy's favorite games on the Wii at home is bowling, so he thought it was pretty cool to be a human bowling ball!

The care that Little Buddy is receiving here is truly first rate.  We have been so impressed and grateful for the doctors, nurses, and therapists who have been caring for him.  We truly don't think he could be receiving better or more loving care anywhere else.

We are also incredibly grateful for the kindness and faith of so many friends - some of whom we've never even met.  We continue to be humbled and touched by the goodness of others.  We thank each one of you for all you have done to help our family and little boy!  You all have made such a difference.  We don't know how we could make it through this without you.  Thank you from the very bottom of our hearts!

Thursday

Today we had a care conference with all of Little Buddy's doctors to better plan what the short and long term goals each department has for him.  He is primarily done with Neuro Surgery, and the main things we have to look at now are his cancer treatments and his therapies -- Physical Therapy (PT), Occupational Therapy (OT), Speech Therapy, and Music Therapy).  He is still on his feeding tube, and probably will be for several more weeks.  He also has a long way to go with his other therapies, and so we are going to try to keep him as an inpatient for at least the next seven weeks, and then re-evaluate where he is and what we need to do at that point.

We also found out today that he will start his radiation and chemotherapy next Thursday, on Feb 12th.  He will have 30 radiation treatments that are scheduled to end on March 25th, but he won't have his last chemotherapy treatment until the end of February or beginning of March 2010.  Medulloblastoma is a very aggressive form of brain tumor that they have to treat very aggressively to keep it from coming back.  The good news today is that his lumbar puncture showed that there are no cancer cells in his spinal fluid.  That, combined with the fact that the cancer didn't spread and they got it all out in surgery greatly increases his chances for a long and happy life - to as high as 85%.

I really don't want to sound ungrateful by saying this, but I have to be honest that while I am extremely grateful for all of the many, many blessings that have come to help and save Little Buddy, my heart is heavy tonight because I miss having my little boy at home, and I am sad for the hard year he has ahead.  The house seems empty with him gone, and it appears that he will be gone from home for at least two more months, and most likely longer.  It's just kind of a sad situation, and I miss him very much.

Wednesday

I am very happy to report that not much new happened today.  That is a good thing because it means that our little guy is doing well.  Little Buddy did get his first bath since all of this happened.  A wonderful (and very needed) thing.  He also had very good therapy sessions, and continues to amaze his theapists by how hard he is working, and what a good job he is doing.  He almost was able to hold up his head by himself today!  That was exciting.  Our little friend is a real trooper who is working as hard as he can with a smile on his face and without complaining to get back to where he wants to be.

Tuesday

Our little buddy had a very sucessful day today.  The best thing that happened today is that he got his shunt out!  The CT scan looked good, so the shunt came out.  That is really a big step in the right direction, and we are so happy.  That will give him more freedom to be moved around without concern for the shunt.  He will now get to sit on Mommy's lap more, be rolled in the gym for his therapy, and, best of all, get a bath (finally!).

Little Buddy also had some very good therapy sessions.  The therapists said that they see definite improvement from yesterday to today, which is exactly what we want to see.  The speech therapist told us that he started swollowing a very little bit today.  That is absolutely a step in the right direction!

Little Buddy had an Opthomologist come and look at the back of his eyes today to try to determine what he can see, and he said that other than a small blood clot at the backof one his eyes, everything looks good.  The blood clot is most likely from the chest compressions that had to be done (they build pressure in the eyes), but it should break up and disappear on it's own, so it's not a concern.  Little Buddy still isn't tracking with his eyes, but that should come back in time.  So some very good news there, as well.

We are very happy with, and extremely grateful for, the great day our little buddy had!

Sunday & Monday Morning

Little Buddy has had a couple of good days.  We were concerned that he wasn't being able to empty his bladder by himself, so his dad and grandpa gave him a blessing yesterday morning.  Within hours Little Buddy was emptying his bladder and hasn't stopped since.  In fact, we are cruising through Pull-Ups like they are going out of style!  The power of the priesthood is so real, and we are incredibly thankful for it!  The next hurdle is to get Little Buddy to start swollowing on his own again.

He has also made progress in that his drain in his head (EVD tube) has been clamped to see if his body will be able to process his cerebralspinal fluid on its own.  He will get a CT scan tomorrow to see if there is too much liquid in his head.  If so, they will either open the tube again, or talk about putting in a permanent shunt.  If things look fine then he will get his tube out.

Little Buddy also got to go into the therapy gym for the first time this morning, and he did great!  He is working so hard to get his body to start responding to him.  Of course, he smiled and laughed through the whole therpay session. :)

Our Little Buddy continues to win hearts.  One of the residents that has been working with him has been rotated to a new area.  She isn't in charge of our little guy anymore, but she still came by today to see how he is doing.  She said that she left a note asking the next resident to take good care of her patients, and she put on the note, "Especially 'Little Buddy'" but then she didn't want any of the other parents to get offended in case they saw it, so she erased it.  But she said, "I still feel that way, though!"

My New Elmo PJs

Music Time :)

All Smiles!

Friday Afternoon & Saturday

Our little guy had a hard afternoon on Friday.  He had to go in for surgery to have a move permanent IV put in for his chemotherapy, and he was pretty nervous to have to leave mom to get it done.  He came out of the surgery upset because he wanted to have Mommy with him the whole time.  The surgery went well, except that his NJ (feeding) tube was accidently dislodged, which meant that he had to have a new one put it in.  Getting an NJ tube in is not a pleasant experience, and our Little Buddy had several tears to shed over the whole process.  Poor little guy!  He was feeling pretty upset by evening, so Mommy got to have him on her lap for awhile in the big chair.  He also got a blessing from his Abuelo (Spanish for grandpa) who had come to stay with him for the night so his Mommy could go home.  After those two things he felt much better and was able to relax and fall asleep.

Little Buddy, was in much better spirits on Saturday morning, and kept the staff amused with his bodily function humor.  He thinks it's just hilarious when he passes gas, and he had a lot of it in his stomach from getting the NJ tube put in, so he did a lot of laughing on Saturday!  We love to hear him laugh!  He was in more pain also on Saturday because of his surgery on Friday, so he had to have some additional pain medication.  But he came through the day without any major problems.

Little Buddy has been having a hard time remembering how to let his urine come out, and also how to swollow.  We've been waiting for these things to correct themselves, but it is starting to take longer than it should.  Finally last night he had a little bit of urine in his pull-up.  Yay!  He still isn't emptying his bladder, but at least he is starting to make a little bit of progress.  That is good news.

Another thing he can't remember how to do is talk.  Before getting sick one of his favorite things to do was to talk on the phone to family members.  We've discovered that the one time he really is able to get some sound out of his mouth (not words yet, but I'm sure we'll get there) is when a family member talks to him on the phone.  He loves it! So we've started talking on the phone to him several times a day to try to help his brain remember how to get the sound out of his voice.

So, things continue to improve little by little.   We are grateful for every step of improvement he makes, and credit it all to the Lord and the many prayers that have been said in his befalf.  Thank you, Everyone!