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.)