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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!