22nd Infusion

My 22nd infusion was a day earlier than originally scheduled. Tuesday was declared a national holiday. So they had to move my infusion one day ahead of schedule. Some parts of the hospital such as the pharmacy only have skeleton crews during holidays so my doctors were worried that we might not get decent attention on that day. So we decided to play it safe and move it one day ahead.

I went to the hospital Sunday evening. Checking into the hospital was faster and smoother since there were only a handful of people in the admitting section that day. All was well.

I spent Sunday night reading and watching T.V. Doing everything I can to stay awake. I wanted to watch the Brazillian Grand Prix. A special formula 1 race, it being Michael Schumacher’s last. It was set to air live at 1 a.m.

Suffice to say I woke up Monday morning still feeling sleepy. I got up at around 7. We ordered breakfast and ate. I had my usual breakfast, pancakes and sausages.

The infusion went well as usual. Except for a power outage but luckily like most hospitals, PGH has a power generator so the power interruption was temporary.

It’s my 22nd infusion and currently the second to the last of the batch of Myozyme we have here. The hospital has only one more batch in stock before it runs out. We’re all praying that the new batch arrives in time. It would be a shame if the infusions have to be interrupted. We’re slowly making progress and as much as possible I’d like to continue building on that progress. Myozyme is too expensive to waste and an interruption of the infusions will set us back.

We’re preparing for this contingency in the sense that I might have to get the next infusion 3 weeks from now instead of 2 to extend our time. Hopefully that extra week can get the meds here on time.

Going back to the infusions… I finished on time and got to go home on time as well. It was different this time since my mom wasn’t around. She usually comes whenever I have an infusion however she was about to leave for a trip to Taiwan and she needed to prepare. So for the first time since we began it was just me. Oh ok.. well not just me. My aides were there and the doctors and the temporary nurse and some other visitors..

Blog Redesign

I’m thinking of redesigning my Fight Pompe blog. Since I also write about other stuff that’s happening in my personal life, I’d like to integrate it all in one blog to keep things simple. Of course Fighting Pompe will alwaya be a big part of my personal life but there’s also other parts. I’d like to be able to write about other stuff too and keep things interesting.

So for those who read my blog, send me your suggestions on what you’d like to see in my blog or how you think I can improve on it. You can either leave a comment or send me an email at “juan(at)fightpompe(dot)com”:mailto:juan@fightpompe.com

I look forward to hearing from you.

Earthquake Part 2

Well another earthquake just hit at around 1:30 this morning. Seemed a bit stronger and longer… I’ll write about it more when I wake up tom. Too sleepy…. Zzzzzz…..


I’ve had a headache for the most part of the day today. So when I felt dizzy I thought it was just a result of my headache. “Earthquake” my brother said. He was sitting beside me. I looked up at the ceiling and noticed the chandelier swaying. It was rocking back and forth. Swaying side to side then in sort of a circular motion. It was an earthquake indeed.

The earth beneath us rocked at about 10:20 to !0:30 p.m. I didn’t get to check the exact time. I was still in shock. My heart was still pounding.

An earthquake scares me for the same reason ghosts scare me. It’s because I can’t run. If something happens I’m stuck here, helpless where I sit. That’s why I’m scared. If I could run, I probably won’t be as scared. It also doesn’t help that we live on the 24th floor. I’ve loved the place where we live. It’s small but nice and in a good location in the city. But after several earthquakes.. I think it’s about time to live somewhere closer to the ground. It’s just that.. I don’t think we can move anytime soon.. Oh well such is life.

Still no word from the local news web sites and TV. I’ll post links as soon as I see them.

Still.. I thank God we’re safe. I hope you are too.


So apparently it was a 5.2 magnitude earthquake that hit Central Philippines. It hit at 10:30 p.m. and the epicenter was somewhere 35 kilometers south of Boac, Marinduque. Manila (where I live) felt an intensity 4 earthquake. But at 24 floors up in the air it felt more than that.

Read about it “here”:http://newsinfo.inq7.net/breakingnews/metroregions/view_article.php?article_id=27849

Mobile Blogging

This is my first post via my brand spanking new mobile phone. I got a new phone for free courtesy of my service provider. In return I get locked in for 2 years. Since I don’t plan to change carriers then why not get something out of it.

So expect more posts from me now that I can blog from anywhere there’s wifi or a 3G signal.

The Countdown Begins

There’s something I’ve been wanting to do since a few years back. This something means a lot to me. I’m really happy that one of my friends graciously agreed to help bring this dream to life. Today marked our countdown to see if this dream will come true. I’m hoping it does. My friend dropped off our entry to a writing contest yesterday morning and now the countdown begins.

There are several reasons why this is one of my dreams. Reasons that I’ll reveal here when we’ve heard from the judges of the contest. I wouldn’t want to preempt things. Suffice to say, I really, really, really hope we do well in the contest. Please pray for us. We should know the results before mid November.

Prayers Needed

It’s been 21 infusions so far and we only have enough supply for 2 more infusions. The good news is that “Genzyme”:http://www.genzyme.com will be sending the supply for the next 3 months. The bad news is, the tax exempt papers for the “Myozyme”:http://www.myozyme.com hasn’t been signed yet. That’s a big problem. If it doesn’t get signed there’s a good possibility that my treatments will be postponed. That’s something that I sincerely don’t want to happen. It would be a shame to stop now even if it’s temporary. I’ve been doing slow and steady progress and I don’t want anything to derail that. It’s also a shame that the time my supply runs out is roundabout the same time as my birthday. That’s going to be a sad birthday indeed.

So, I’m asking for your prayers. Please pray that the papers get signed and “Myozyme”:http://www.myozyme.com gets shipped on time. Thanks in advance.

21st Infusion

October 10 marked my 21st “Myozyme”:http://www.myozyme.com/ infusion. I know I’ve said it before but I’ll say it again, how time flies by so quickly. I can’t believe it’s October and that I’m on my 21st infusion. It really seems like yesterday when we I had my first.

The previous night when like most nights when we’d check in to the hospital. Unlike the last two times though I wasn’t coughing anymore so I had a relatively easier time. I won’t dwell too much on the previous night as it was for the most part uneventful.

The next morning we woke up earlier. It had been agreed upod last time that we’d try to start the infusions earlier than what we have been doing. This meant getting up a full hour earlier. I woke up at 6 a.m. and we all started the day. Stretching, breakfast, bathroom, etc.. Normal routine.

My doctors came in at 9 a.m. to prep me for infusion. Dr. Lani and Dr. Conch were there to put in the I.V. line. (Dr. Conch, if you’re reading this, there you’re on my blog!, Dr. Lani told me you were “nagtatampo” coz I didn’t write about your inserting skills. hahaha. ) Dr. Conch was the one who inserted the I.V. line. I must say she did a good job as she got it on one go.

We started the infusion at 10 a.m. The whole thing went well, as in most days. The lead Dr. couldn’t make it today because of other more important matters. The day went well. We sang a little, while watching the “Karaoke”:http://en.wikipedia.org/wiki/Karaoke channel, had a very interesting covnersation with Dr. Lani. Overall a really good day.

We ended earlier. The infusion was done around 1:30 p.m. and I had lunch shortly thereafter. I think I like this schedule better since we finish earlier and I get to go home much earlier.

Soiree Aquarelle

I got an invitation early this week to attend an art exhibit opening. My ninang (god mother) is having a one-woman exhibit featuring her water color art works. It’s at the Gallery Joaquin about 10 mins from where I live.

The invitation had a note which said that she was inviting me to be one of her special guests. From what my mom said, I just thought that special guest meant that because I was one of her god child that she just wanted all her god children to be there. I thought nothing big of it. So I went with my mom and dad.

To my surprise when I got there, she said that I together with the other sons of her close friends would be the one to cut the ribbon to open the exhibit. Imagine my surprise!

So it was really a good thing that I went, and went almost on time for that matter. I was privileged enough to be asked to cut the ribbon.

The exhibit went well. It showcased her water color artwork composed of a flower series as well as a Koi series. Seeing the artworks and being able to support her was a great motivation to go. A big plus was being entertained by a nice band called Rockin Revival accompanied by an extremely gifted young violinist. I think her name is Gail Ramos. If I’m not mistaken.

She must have been 13 or so.. She couldn’t have been older than 16. Yet she played with a mastery beyond her age. Being good at the violin is great already but she also played the flute. She was equally good at it as well.

A night filled with good artwork, good music and friends. How can you go wrong with that?

Juan Day At A Time

I got “featured”:http://www.philstar.com/philstar/NEWS200610021703.htm again on a local newspaper here in Manila. “Bernadette Sembrano”:http://www.bernadettesembrano.com/ wrote an article last Monday featuring me and “PSOD”:http://www.psod.org.ph. It was a nice article. I thank Bernadette for doing the piece. Not becaus e I got featured again but because PSOD got featured. Any publicity for PSOD is welcome.

To all those who left comments on my blog after reading the article, many thanks. I always appreciate hearing from you guys.