Book Review: The Cure

I’ve finally finished reading “The Cure” by Geeta Anand. I got it last Monday and started reading it. If I didn’t have to work and do other things I would not have put the book down. I wanted to finish it as soon as I could. For the simple reason that this story is part of the “world” that I live in. The Pompe world.

There has been some debate in the Pompe community about this book. Somehow this book has been quite controversial.

“The Cure” is about the tale of the Crowley family’s quest to find a cure or treatment for Pompe disease. In the forefront of this struggle is John, the father of Megan and Patrick, who both happen to have Pompe’s disease. John is married to Aileen and they have another son, John Jr. their eldest. He’s not affected by Pompe.

When Megan was diagnosed to have Pompe’s disease, this started, what would be a roller coaster ride for the Crowley family in their quest to find a treatment. Up, down and sideways their lives went. One battle after another.

The book starts out during John’s graduation from Harvard Business school. Megan has just been born and their lives is looking to be the picture perfect american family. A man on the way to the top, loving wife and two beautiful kids (Patrick has yet to be born). Everything seemed to be going well. Armed with his new MBA, John was going to make sure his family would have a comfortable life.

Tragedy then struck. Megan was diagnosed to have Pompe’s disease. Their world came crumbling down. Patrick had been born a year later. He seemed like a healthy baby but after some time he would also be diagnosed with Pompe.

One child with Pompe is devastating. Siblings, well words can not explain, the anguish that a parent must feel. Being a Pompe patient myself, I have an idea how hard a life it can be.

Never wanting to give up on his children, John set out on a quest to find a “cure” for his kids. This would take him on a journey that will last several years. To this day, while Megan and Patrick are receiving enzyme replacement therapy (ERT) John is continuing to find a better “cure” for his kids.

I won’t be going into much detail about the book. I don’t want to spoil it for other people. While it’s a true story and people know about it, I still wouldn’t want to spoil the enjoyment of reading the book yourself and finding out how it turns out.

Now, what do I think of this book? Being in the Pompe community, I’ve heard different sides to the stories and events presented in this book. Still, I’m not personally privy to most of important events that transpired here so I can’t for certain say which is true and which is not.

There are people who are not very happy on how John went about finding a cure for his children. Some might even say that some of his actions were unethical and did more harm than good to his children and other Pompe patients. The book didn’t depict him to be the perfect father, the knight in shinning armor who saved his little princess. The book portrayed him and his flawed character.

I’ve had the chance to meet John once during a trip to New Jersey on November 2001. I met Aileen and Megan too. I visited the Novazyme office in Princeton New Jersey. I spent about an hour or so with John and the other employees of Novazyme. It had been a good visit. From what my meeting with him, he seemed like a nice man. However, that meeting was brief and not enough to get an accurate assesment of the type of person he is. Sometimes it takes a lifetime to get to know people. At least the real person inside.

There are parts of the book that I don’t necessarily agree with or believe. Particularly on how Randall and Marylyn House have been portrayed. Randall and Marylyn House are the parents of Tiffany, a girl (now woman) affected with Pompe as well. They started the AMDA or Acid Maltase Deficiency Association. Acid Maltase Deficiency is also another name for Pompe. The AMDA through the personal resources and finances of the House family pushed for moving the Pompe community forward. They have been credited as the people responsible for putting together all the worlds foremost Pompe experts to meet with each other and start collaborating in finding a way to combat this disease. The Pompe community owes a lot to them.

In the book, there was a confrontation between John and the Houses. First when John decided to put up a foundation of his own, and the next when John wanted to attend a conference that was meant for scientists and doctors only. The book made it look as if Randall was this rich bully. I don’t know what really happened during those events but I’m not inclined to believe that it really happened that way.

From what I know and from my interaction with Marylyn and Tiffany through email and other forms of communication, they don’t strike me as “bully” type of people. In fact a lot of people owe a debt of gratitude to them. If it were not for the AMDA I don’t think we would be where we are today. The AMDA pushed a lot for the advancement of the whole community. So in this aspect I think the book was unfair to them.

As a whole the book is an interesting read. Do I agree with all the facts, no. It is nice though to read about the other events that I did not know about. Of course this is just one version of the story. There are others and maybe in the future I will get to know the other stories.

This is a tale of one family’s struggle to fight Pompe. It’s not a picture of what happened with the whole Pompe community. It’s just part of it. There are other people in the Pompe community who also have stories to tell. Other people who’s contribution is immeasurable in terms of how it affected the Pompe community as a whole. I wish that their stories can also be told.

Whether or not you’re in the Pompe community or not, the book is still worth reading. It’s well written in the sense that it’s an easy read and the pacing is good. Are the facts all correct, hmmm.. I can’t really say. Like I mentioned this is just one side of the Pompe story.

At the end of the day, while some people say that what John did wasn’t totally good, personally I can’t blame the guy. When the lives of your children are at stake you’d do anything for them. In that aspect, I understand his actions. Do I agree with what he did, no totally. But I can understand why he did it.

If you get a chance, get a copy of the book. The writer promised that 10% of the profits go to the MDA or Muscular Dystrophy Association which I think will earmark it to support Pompe programs.

2 Hugs And Several Kisses

When things are taken away, you then realize the importance of their worth. Such is the feeling of being hugged and hugging someone. Ever since I lost most of my upper body abilities, I haven’t been able to give someone a hug. I haven’t been hugged in a long time as well. My family is not the touchy type of family. Don’t get me wrong, we love each other a lot but we’re just not like that.

My dad and mom hug each other but that’s them. That’s normal for husband and wife.

I miss hugging someone and being hugged. So today was certainly a great day. I got not just one hug but two. Chris came by to visit today. We spent a few hours looking at pictures and talking. Before she left she gave me a hug. I asked her if she’d help me give her one too. She took my arms and put it around her, for a brief instant I was able to give her a hug. I tried to hug as hard as I could, I can’t say it was that hard but it felt good to be able to give her a hug. It’s hard to understand how it feels. It just feels great. There’s a warmth that is felt from a hug. Love, reassurance, a sense of home, comfort, etc..

The second hug I got was totally unexpected. Tina is from SFC. We became friends about a month back, although I’ve met her long before that. We became friends. Tonight we had a joint Household meeting here at my place. For the uninitiated, a Household is a core group in Singles For Christ. When we finished the meeting, she came up to me, sat beside me and we proceeded to chat. She’s a warm, nice and kind girl. When it was time to leave, she thanked me for hosting the meeting, gave me a hug and kissed me on the cheek. Now the kiss is not something uncommon. It’s a normal greeting here in Manila and Singles for Christ for that matter. The hug was a welcome surprise though. That was something I really appreciated.

Of course I got several kisses from the other members. But like I said that’s a normal greeting. However normal it may be, it’s always welcome. A kiss on the cheek is always good. 🙂

19th Infusion

Finally! Something interesting to write about. My 19th infusion or at least my hospital stay didn’t start out as I planned it to be. However things did turn out well in the end. That’s always good.

Monday was a busy day. Apart from work, I had participated in a call for a conference that Genzyme was doing in Japan. I gave one of the patient testimonials. The hard part was that I was talking on the phone but could not hear the reactions of the crowd. So I had to give the testimonial blindly or I should say deafly. Is there such a word?

After the call we got ready for the hospital. As I was riding the car, I started coughing again. I had a bit of a cough the day before. But not so much to warrant a doctor’s visit. The thing is, if I sit up the cough gets worse cause the phlegm goes down to the lungs. I have a technique to expel it but it doesn’t work in the car. I had to recline my chair and try to keep as leveled as I could so I wouldn’t cough much. We got to the hospital and waited a long time for the room. Really, sometimes the hospital tests your patience. First they said we had a room already. Next thing they say there’s still someone occupying the room. They gave us another but it still has to be cleaned. So it took an hour and a half for us to get a room.

In order for my cough not to get worse, they wheeled me into the room on a stretcher. Ha! It was quite a trip going through the usual route looking up at the ceiling. A whole new way of looking at the same old route.

The rest of the night went quietly. A dinner of cheese burger came after my being able to expel the phlegm. Not a good way of painting a picture of my dinner but hey, that’s how it happened.

Infusion day went better. I was up at 730. We ordered breakfast, did some stretching, ate and did all my morning rituals. By 10 am I was ready for the infusion. The enzyme was prepared early. We usually start at 11 and this time the enzyme was in the room by 10. We got a little sidelined from a visit of another doctor. My regular doctor could not make it since her son is sick. Another doctor dropped by to assure me that if I had any problem that she was just there in the hospital. One thing that reassured me though was that my other regular doctor was there. I trust her completely so I felt good.

What made the this infusion day different was a guest. A special guest. Chris, my ex girlfriend a good friend was in town for a visit. She lives in NY and she’s here for a short vacation. She decided to spend the day with me. She wanted to see how an infusion goes. She came by the hospital at around 11am and spent the day there. She also saw my mom for the first time since she arrived. My mom and Chris have always gotten along well and I’m sure both of them were glad to see each other.

The infusion went well. We finished on time. No difficulties whatsoever. I’m glad that Chris was able to share that experience with me. It’s a big thing for me.

Chris wanted to go to the Chapter Assembly of the Singles For Christ Chapter I belong to. She said it was important that she went. I told her if I felt well enough I’d go with her. I did feel well enough to go and so I did.

The evening went well. She had a good time at the assembly and I was just really glad I could be there to accompany her.

It was a long day but a good day nonetheless.

The Cure

!/images/24.jpg (The Cure)!

Pulitzer Prize winning author Geeta Anand has written a “book”: about a father’s struggle to find a “cure” for his two children with Pompe.

“The Cure” is the story of John Crowley, father of Megan and Patrick, two siblings afflicted with Pompe’s disease. Upon learning that both children had Pompe’s disease, John quit his well paying job to start a company dedicated to finding a treatment for Pompe. From a using his personal finances to raising venture capital, John was able to raise 27 million dollars to fund the companies’s search for a cure. In late 2001, the company was sold to Genzyme for a record 137.5 million dollars.

I’ve personally met John, his wife Aileen and Megan during my visit to the companies then headquarters in Princeton, New Jersey. My impression is that they’re nice people. But it was a short visit so I really can’t say for certain.

The story has come under some criticism in some circles of the Pompe community. There are things about the story that didn’t sit well with them. I’ve heard some opinions but will reserve in making my own since I haven’t read the book.

I’ve placed an order for the book and awaiting it’s delivery from Amazon. Once I get a chance to read the book, I’ll let you know what I think.

18th Infusion

August 29th marked my 18th infusion. I can’t believe that it’s been 18 sessions already. It seems like only yesterday when I started my infusions. How time flies.

By this time, we’ve got the infusions down to a routine already. There hasn’t been much hiccups of late. It’s been smooth sailing for most of the sessions that we had.

I guess now our only major problem is getting a line in for the infusion. I’m a moderately difficult patient to get a line in. It usually takes several tries for them to get it. Add to that that it’s been 18 infusions so some of my veins are already bruised and can’t be used for the time being.

My left arm is usually easier to get a line in. So for the past few infusions it’s always been on the left arm. This time though we got to use the right arm. It took several tried but we got it in.

The session went well except for a slight elevation of my heart rate during the beginning. This couldn’t have been due to the enzyme coz we still haven’t gotten the enzyme in when my heart rate went up. A few minutes after it stabilized and all went well.

The highlight of this session was the visit of Dra. Padilla. She’s one of the lead doctors for the IHG (Institute of Human Genetics). We discussed our presentation for the LSD conference in Japan this September. I’ll be doing a phone patch together with my mom to talk to the doctors during the conference. We threw around some ideas about what effective message to give.

We also discussed my transition from the EAP (Expanded Access Program) to the ICAP (International Charity Access Program). With the FDA approval of Myozyme, Genzyme is transitioning all of its clinical trials and other programs to commercial ones. Either through HMO, Insurance companies, private funding or programs such as the ICAP.

I must admit I was worried when I found out the news. As much as I’ve prepared myself for the eventuality that I might need to stop getting Myozyme because the EAP has finished, it doesn’t actually hit you until it’s there.

However I was reassured by my doctors that they don’t see any problems with the transition to ICAP. Let’s hope so.