Monday, November 30, 2009

Khumbs


Thanksgiving Day last Thursday was celebrated all across America but it was a sad day in Zimbabwe. We lost another young man to hemophilia, Khumbs.

Khumbs was very special to me. I first heard of him in 1998, when he was only eight years old. He was about to lose his leg after an ankle bleed became infected. It was a risky procedure because there was (and still is) no factor available in Zimbabwe. We tried to ship product as quickly as possible, to try to save his leg, but it was too late. In 2000 I traveled to Zimbabwe, and met little Khumbs at his home in Bulawayo, Zimbabwe's second largest city, which always reminds me of New Orleans. He was charming, with a big smile. His mother had died recently. Loss, then more loss. Zimbabeans are used to losses.

In 2001 we held the first-ever hemophilia camp in Zimbabwe, named after one of the founders of the Zimbabwe Haemophilia Association, Norman Mubaiwa. 65 children who all come from impoverished homes attended. It was held at the Hwange Safari Park, and for the first time in their lives, the Zimbabwe kids got to see their native animals. Zebras, giraffes and wildebeests all came to the watering hole at dusk. Khumbs followed me around everywhere at that camp, smiling his infectious smile. On spindly crutches and one leg, he scuttled about, always tailing me. He didn't speak English, only his native Ndebele. When I would turn and look at him, he'd get shy and smile. Later on, I saw him sitting by the small inground pool. I motioned for him to go in but he was too shy. Zimbabweans are so polite and sensitive. When I insisted, he finally believed me and next thing I knew, he shucked off his pants and jumped into the pool in his underwear, not at all conscious of his stump. He had a blast!

I took a photo of Khumbs at that camp, and his smile summed up the joy I have seen in children worldwide when they go to camp. He was beaming. I took that photo and had it digitally enlarged and processed like an oil painting. I hung it on my wall so that Khumbs' smile was with me every day.

I returned to Zimbabwe in December 2007. Conditions in the country had deteriotated unbeliveably. 80% unemployment, one million percent inflation, food shortages. I returned to Bulawayo, not an easy task given the lack of gasoline; it's a five hour ride from the capital. We visited Khumbs again. He was so tall! And so healthy looking! His wonderful uncle took Khumbs and his brother in, after their father died. More loss. Khumbs was perched on the same pediatric crutch that he had been using, which was now patched. After our happy visit, I went off to look for a new crutch.

We found Khumbs a sponsor and he became our first enrollee in Save One Life. This program provides financial resources each month for children with hemophilia in the developing world. His sponsor was Jill Smith, a hemophilia nurse from Australia, who had traveled with me to Zim in 1999. She had met Khumbs, too.

How shocking to awaken on Thanksgiving morning to a text message from Zim saying: "Khumbs is gone. We are devastated." More loss, always more loss.

Khumbs' picture will forever stay on my office wall, a snap shot of a time when we gave a brave little boy who had lost almost everything the most wonderful time of his life--hemophilia camp. And now, we are the ones left with the loss.

(If you'd like to sponsor a child like Khumbs, please visit http://www.saveonelife.net/ Despite his loss, we are saving lives!)

Monday, November 23, 2009

The Season for SHAREing



Thanksgiving is celebrated on Thursday across the United States but there are thankful people everywhere this week. One of them is Jagat Man from Nepal. Even though we helped him have a leg amputation, he's grateful to be alive. He has hemophilia with an inhibitor and the bleeding and subsequent tumor in his leg may have killed him.





We have dozens of stories about those we have helped in impoverished countries, and we are pleased to start sharing them with you on a regular basis on Facebook. Project SHARE (Supplying Hemophilia Aid and RElief) now has its own page, and we welcome you to visit, leave a comment, and enjoy learning about your brothers with hemophilia in faraway places, where factor is usually not available.

Visit us at: http://www.facebook.com/pages/Project-SHARE/149435267732?ref=mf

You will even be able to converse with our friends around the world.

In America this week, we can be thankful for our medical care, and above all, the factor concentrate that keeps our loved ones alive. We at LA Kelley Communications are grateful for the resources to be able to send factor around the world, to those in great need and in pain. Thanks to our sponsors, and also to those of you who have sent factor. Happy Thanksgiving!

Sunday, November 15, 2009

Hemophilia on YouTube

YouTube can be a lot of fun-- you can locate the worst of American Idol tryouts, music videos, that adorable baby dancing to Beyonce, clips from movies, even whole movies, and most likely any cartoon you ever wacthed as a child on Saturday mornings. The possibilities are seemingly endless.

It's also turning into a source for hemophilia information and public awareness. One of the first and best items I ever saw on YouTube is actually a brief cartoon from India, featuring a child. Check it out!

http://www.youtube.com/watch?v=F0ZoEGnTAM0

We even posted our own first video, from my trip last year to the Philippines.

http://www.youtube.com/watch?v=AtOWlX5s_Oc

Have you found a good video about hemophilia on YouTube? Let us know what you found. You'll see profiles on people with hemophilia, a guy infusing, public service announcements and more. Surf away!

Sunday, November 08, 2009

NHF Annual Meeting Wrap Up


Last week was the NHF annual meeting, held at the San Francisco Marriott. Beautiful location, beautiful city and lovely weather all made this a very nice meeting for all. The fact that it coincided with Halloween in such a spirited city made it fun for many attendees. Of course there were meeting to attend, things to learn. No surprises (unlike last year's meeting) and I was happy to see a big emphasis put on inhibitors this year. I attended the Grifols' sponsored symposium on inhibitors, and was able to hear my friends Janet Brewer and son Stephen speak, as well as Kerry Fatula, mother of four boys (three of whom have inhibitors). If nothing else, the meeting was worth it to hear them speak. What powerful stories! They go through more medical interventions in one year than Tommy and I have been through in his whole 22 years. This is a struggle faced by all families with inhibitors.

I was most happy to meet some folks from Medic Alert; our community uses their medical jewlery so often, it felt like meeting family! (See photo)

I gave a presentation on Saturday at the Baxter symposium, with the theme "Your Tomorrow Starts Today." It was fun to share the stage with John McNeil, a young man with hemophilia getting his medical degree, who also happened to be Tommy's counselor back at hemophilia camp! Social worker Terry Hammink (University of Minn. medical Center) did a great job moderating the morning. We were saddened only that Ellis Sulser, a top advocate in our community, could not join us as planned, due to his health.

I saw a lot of new families, and some long-time friends, some of whom I have not seen in 15 years! This is one of the great joys of our community, to know so many, to share so much with them, and to go through life together. No matter how many years have passed, a family with hemophilia is a family to us all forever. Congratulations to the NHF staff for once again pulling together a great meeting for our community.

After the meeting, Zoraida, my co-worker, and I took a day off with Paul Clement and his family (Paul writes for us) to visit Alcatraz, the infamous island prison in SF bay. It was historical, educational, and chilling. I highly recommend it to all; you'll not find many places like it.

Angie.... I still owe you that glass of wine!

Great Book I Just Read
A Long Way Gone: Memoirs of a Boy Soldier by Ishmael Beah
Zoraida gave me this book for my birthday, and I finished it in two nights. It is a gripping and tender story of an innocent African boy in Sierre Leone, whose idyllac life is torn apart by civil war when his village is raided and he is forced to become a boy soldier at age 12. He loses everything, his entire family, his innocence and even his memories as he is forced to survive and eventually commit atrocities against civilians and rebels alike. Eventually he is rescued by UNICEF, and he shares his painful rehabilitation without asking for pity. It is a harrowing account, and breathtakingly honest; Beah is an exceptional writer. There is a happy ending, though nothing can ease his lost years and innocence. A must read. Four stars.

Sunday, November 01, 2009

A Stitch in Time


Hemophilia always has a way to throw a curve ball at you. Sometimes every month; sometimes years go by. We were thrown one last Monday.

Tommy moved back home with us late August (but still attends college). At 4:30 am he woke us up, complaining of stomach pains. "I think I'm bleeding inside," he said. He said he had thrown up.

I asked if he were vomiting blood-- no. "You probably just have indigestion," I mumbled (knowing he likes to eat a lot of pizza, soda and such), and, being the concerned mother I am, suggested he go back to bed. His being up late wasn't too much of a concern as he always keeps Vampire Hours.

He came back at 5:30 am. "It's killing me," he said tensely, "I have to go to the ER--now." Before I could convince him it was still indigestion and that he should go back to bed until I get up, he went downstairs, got into the van and drove himself to the ER. I was happy he was taking control of his health care and went back to sleep, convinced it was nothing to really worry about.

Then I awoke at 7, showered, got dressed, and headed for the office. Around 10 am, I got a call on my cell: "This is Ana Jaques Hospital; your son was admitted with appendicitis. Do you... want to come see him?"

I couldn't believe it! Appendicitis? I had a couple of thoughts: what an idiot I am! What kind of a mother am I? I am so proud of Tommy for following his (gut) instincts.

En route to the local hospital, I got a call that he was being transported via ambulance to New England Medical Center, his HTC. I drove so fast I actually got there before the ambulance. A little bit of guilt goes a long way.

I learned a lot that day. Tommy is very grumpy when ill. Doctors are getting younger and younger (as I get older and older). The ER is a super busy place, filled with people in pain, discomfort. There's no privacy. And no one was going to help me unless I practically shouted, "Will someone give my son another dose of morphine? Please?"

Seeing my son lie there, in pain or dozing on heavy painkillers, I recalled our first weeks with our first born. The hospital visits, the tears, the feeling of being lost in the hospital maze. Time has a way of blurring all this. What was it I once wrote in my book about navigating the ER? Stand up for your rights; tell people what you need?

Many people came in to look at Tommy, and all asked the same questions: When did it start hurting? Did you throw up? Does it hurt here, or here? Can I take a look? Can I listen to your heart? When did you take factor?

After the third doctor, I had to tell Tommy that this is a teaching hospital. All these doctors need to learn from him in order to become better doctors. He tried to understand, but from his point of view, it seemed no one was listening to him as he had already told people the answers to these questions.

Our hematologist showed up and took charge. His factor was ordered. I was surprisingly pleased to hear Tommy say that he infused himself at 2 am (the pain had started at 1 am). He tried to tough out the pain for three hours before he woke me up.

By 2 pm he was taken for surgery. All went well and in less than an hour the appendix was out and he was in recovery.

He's doing great now, just sore. He plans to go to school tomorrow. Amazing. A stitch in time, even with hemophilia, and he's back on his feet. And I realized how much we can be lulled into thinking something is not so serious, how much we want to deny what's right in front of us. Luckily, Tommy chose to listen to his body, follow his instincts, and not heed my advice to wait and see.

I was bemoaning what a "bad mother" I was while at the NHF meeting this week, and bumped into my friend Melissa Penn, mother of a child with hemophilia and executive director of the NYC Hemophilia Chapter. She reassured me with the thought that this was the ultimate test: Tommy had learned when in doubt, infuse (and go to the ER), even when it's your own mother telling you not to worry. We had both succeeded.

Parting Shot: Last week I attended the Children's Cancer and Blood Gala Ball in New York City and met Ted Turner, founder of CNN, who received the Breakthrough Spirit Award, which I had received last year. His new book, Call Me Ted, was given to all attendees. The event raised over $1 million for cancer research and to help patients unable to afford treatment.



Great Book I Just Read
Things Fall Apart by Chinua Achebe
This 1958 novel is a classic in African literature. This is the story of Okonkwo, a wealthy and respected warrior in a Nigerian in the 1800s. He is proud and masculine, and has three wives and many children. The first half of the book details his life and gives great insight into the complex culture of African tribes and Okonkwo’s unwavering desire to be powerful and manly, which makes him the tragic hero. The second half reveals how the coming of the white man changes African lives forever. Christian missionaries move in, and one, Mr. Brown, is especially kind and tolerant. Okonkwo suffers humiliation when his own son decides to become Christian. Okonkwo clashes with everyone and finds himself a relic, as change and modernization take place before his eyes. The book was written as a response to early Western literature which portrayed Africans as uncivilized and primitive. Four stars.
 
Virtual Walk for Hemophilia