Life according to Star

I was cleaning up the children's things after lunch today when I found an essay written in an intermediate paper. It was Star's. Curious, I stopped to read it. It was a touching journal of what has been going through. Though simply written (she was 8 when she wrote it), I felt proud by how our family's "baby" look at life. She has always been a source of many lessons for us. Her child-like faith taught us to be stronger. She may not always understand what is happening around her but she doesn't worry. She knows many people pray for her, and for her, that is enough assurance that things will get better. With her permission, I am posting her article below. She also posted it in her blog. I hope other children who are going through a different childhood like Star will have the same positive outlook in life. Things will be better, that's for sure.


WHEN I WAS BORN
by Star Echavez

When I was born I didn't know anything. I just knew how to cry and eat. After six months, I went to school. I was always sick since I was born. I always went to the hospital. I didn't know what was happening around me. I didn't care. I grew up unhealthy (kind of) because I was always sick. I still get sick up to now. I always have blood tests. But I didn't know why. Now that I'm bigger I know the reason.

Last year when I was grade two, I always had nosebleed. I had to go to the school's clinic when I had nosebleed. My life wasn't easy for me -- always going to the hospital and always absent from my class was very hard, because I love going to school.

We have a great school. It has great teachers especially when I was grade two. I like Teacher Christine because she's always happy and she always makes us happy.

We didn't know me and my mom have a disease -- the "von Willebrand's disease." We have type 2M. I still didn't care. Now that I'm grade 3 I still don't care about the disease. I'm not better but I will be. Many people pray for me. Now I'm healthier but I still get sick. But this life (my life) gets better and better. THE END

Kindness abounds -- THANK YOU!

To all who reposted my post and forwarded my email, THANK YOU!

Indeed, kindness abounds. Through the forwarded posts and emails, we were finally able to get in touch with an importer who helped us secure the blood factor that Star needs.

It turned out that Koate and Alphanate are from human plasma and both are regulated products. We cannot buy any of the two ourselves. They can only be acquired through a hospital or a hematologist.

God willing, Star will be able to have her transfusion by Monday.

To all who prayed with us and gave words of encouragement, THANK YOU!

It is the prayers of others that makes us strong amidst difficult times.

I believe all things work together for good and surely God has a reason for allowing this bleeding disorder in our family.

This is a hereditary disorder which caused the life of my mother. Thankfully, with the modern technology, Star may be able to live a "normal" life.

Please keep Star in prayers. She is a bit scared about the transfusion. But she is excited too. Her bleeding has caused delays in our travel (we were supposed to leave today.) On Tuesday, we will be off to our long-awaited family vacation. =) God is good all the time!

God bless you all and return your kindness with more favors.

Help! Star needs blood transfusion!

Hi everyone!

Anyone who knows anybody working with Bayer or any pharmaceutical company that sells blood by-products? Or where we can buy blood factors Koate or Alphante?

Koate and Alphanate are anti-hemophelic concentrates that can help regulate the clotting factor.

Our 9-year-old daughter Star needs to have blood transfusion ASAP to stop her frequent nosebleeding. As I have shared in my past posts (here and here), Star has a bleeding disorder called Von Willebrand Disease. It's a genetic bleeding disorder where the platelets are either defective or not functioning well.

Lately, Star has been nosebleeing more frequently again, and unlike in the past, there are now big blood clots. This afternoon, there were about four of those.

Thankfully, results of her CBC and platelet count today are good. No anemia. Platelet is high which means her "good soldiers" are fighting. But her bleeding has to be addressed, otherwise, it will lead to more complications. However, Koate or Alphante are not available in the Philippines. But in case you know of anyone in the pharmaceutical companies, they might know how we can buy them.

Both of these products may be available in Hongkong or Singapore. For those with kind-hearted friends or relatives in those areas, can we ask for assistance in finding out how much this costs and if they are willing to facilitate our purchase of the products?

Please PM me or email me at andrea.echavez@gmail.com.

Thanks a lot and God bless!

Is there a bleeder in the house?

I've blogged many times about the bleeding disorder in our family which affects our 8-year-old daughter Star the most. Since Star was diagnosed with von Willebrand Disease, we have taken a personal crusade to inform people about this disease and prevent senseless deaths like my mother's. I hope you can help me spread this blog especially to doctors and parents. Who knows, through this you'll be able to save a life. For those with a similar experience, please PM me or email me.

o 0 o

Is there a bleeder in the house?
By Andrea Trinidad-Echavez

Does your child easily bruise or frequently nosebleed? Do you wonder why he or she always gets bloody while brushing teeth?

Don't take those seemingly harmless signs for granted. They might just be symptoms of something else.

For years, my husband and I had been looking for answers to the condition of our youngest daughter, Star.

Catching colds from her older siblings few days after she was born, we were alarmed when blood started dripping from Star's tiny nostrils barely before she turned a month old.

At first, we thought hers was only a bad case of colds. Nevertheless, alarmed of the sight of blood, we rushed her to the emergency room. The pediatrician ordered blood work-ups on Star. When the results came, there was nothing significant in the findings except that she was anemic. She was given an extra dosage of iron.

As she was growing up though, Star's nosebleedings became more frequent. It came anytime of the day. Initially, we thought it had something to do with the temperature. But even when we confined her inside an air conditioned room on humid days, she would still bleed. It didn't also matter whether she was indoors or outdoors, or playing, sitting down, or sleeping.

Over the years, we got used to her teachers, school nurse or even school service driver calling us to express concern over her frequent nosebleeding. (Star started going to school at 6 months under UP Diliman's Infant Development Program of the Child Development Center.) We could only assure them that we had been seeking medical help on her case. She had undergone so many work-ups, ranging from blood tests to ENT (ear, nose, throat) checks and even neurological tests. Yet, specialists could not see anything wrong with her except that she was perennially anemic.

Last year though, Star's nosebleeding came at an alarming frequency – this time, almost daily. Sometimes, it would come up to four times in a day. After a series of trips to different specialists, we were already becoming frustrated. By then, Star was nosebleeding for almost a month in a row.

Family of bleeders

We had all the reasons to be alarmed. Bleeding runs in our family. My mother literally bled to death while undergoing a minor surgery. This, even after going through routine blood tests prior to the operation. The 10 bags of blood transfused on her didn't help at all. Few hours after she entered the operating room, she expired on the operating table while the doctors were trying to stop her bleeding. She was only 51. An uncle, my mother's older brother, almost died of bleeding while undergoing tonsillectomy. My eldest sister suffered hemorrhage and almost died during her first childbirth. My other older sister had two or three miscarriages.

Every time we bring our daughter to a doctor, I would give a rundown of our family history. Yet, it didn't seem to help pin down where Star's nosebleeding came from. Finally, we were referred to a well-known hematologist who specializes on hemophilia.

Von Willebrand Disease

"I suspect your daughter has von Willebrand Disease," Dr. Mary Chua, founder of Hemophilia Association of the Philippines for Love and Service (HAPLOS), told me after I gave her Star's and our family history.

Von Willebrand Disease, she explained, is a rare clotting disorder similar to hemophilia. While hemophilia is considered a "men's disease" because it occurs primarily among males, von Willebrand Disease can affect both males and females.

Rare genetic disorder

According to kidshealth.org, von Willebrand Disease is the most common bleeding disorder. But bleeding disorders, in itself, is considered rare. Von Willebrand Disease, for instance, affects barely 1 percent of the population. In the Philippines, there are less than 20 known cases.

People born with the disease may either have defective von Willebrand factor, low levels of von Willebrand factor or no von Willebrand factor at all.

Von Willebrand factor is a protein in the blood that is necessary for clotting. Without it or with defective von Willebrand factor, the blood takes longer to clot. This causes abnormal bleeding, and in the case of my mother, could even lead to death from blood loss.

No diagnostic facilities in the country

Unfortunately, there are no facilities in the country that can diagnose von Willebrand Disease. We were told the tests are quite complex that it needed special reagents and machines. The technology is only available either in Hongkong or Singapore in Asia. We were advised to bring our daughter to Queen Mary Hospital in Hongkong.

We flew to Hongkong November last year. The procedure was as simple as regular blood tests, only more blood samples were taken. Since von Willebrand Disease is a hereditary disorder, the doctor also took blood samples from me.

Because of the intricate procedures in the tests, the diagnosis came out only in March this year. It confirmed Dr. Chua's suspicion. My daughter has von Willebrand Disease Type 2M. And I have it too.

Types of von Willebrand Disease

According to the World Hemophilia Federation, there are three main types of von Willebrand Disease – Type 1, Type 2 and Type 3.

Type 1 is the most common form of the disease, accounting for approximately 80% of all cases. It involves a deficiency of the von Willebrand Factor.

Type 2, of which there are four subtypes – Type 2A, B, M and N, involves a qualitative defect of the factor wherein it does not function properly.

Type 3, on the other hand, involves a near or complete absence of the factor, and is the most serious type.

Diagnosis

Diagnosing von Willebrand Disease is not easy. That is why a lot of patients live with it for many years before finding out that they have it, if at all. Many doctors may not even be familiar with it.

In our case, we have sought out at least 10 specialists over the past seven years, ranging from hematologists, ENT, neurologist to nephrologists, if only to find out what was causing our daughter's nosebleeding.

Family history

Unlike hemophilia, von Willebrand Disease cannot be spotted in just a few blood tests. Oftentimes, it is misdiagnosed because many doctors are not familiar with it. For instance, a person with a low platelet count because of Type 2 von Willebrand Disease could be diagnosed with leukemia. Or a woman with heavy, prolonged menstrual bleeding because of von Willebrand Disease, who has not responded to hormone therapy, could be advised to have a hysterectomy.

In some cases, nosebleeding could be construed as deviated septum (physical abnormality in the nose) or that it could simply be brought about by either extreme or sudden change in temperatures.

Dr. Chua said this is where clinical history plays a crucial role. Most documented von Willebrand Diseases cases in the Philippines were identified through their clinical history, such as the symptoms shown by the patient. These may include frequent or prolonged nosebleeding, easy bruising, gum bleeding, prolonged or heavy menstruation, and prolonged bleeding during surgery, accident, medical or dental procedures.

Family history could also be very helpful in identifying possible von Willebrand Disease patients. In our case, my side of the family history helped Dr. Chua identify my daughter as a probable patient.

Laboratory tests are necessary to know what type of von Willebrand Disease the patient has so that appropriate treatment could be administered.

Not fatal but…

Fortunately, von Willebrand Disease is not as fatal as cancer, leukemia or other blood diseases. People affected by the disease may still live a normal life for as long as they receive regular treatment.

Treatment can vary from nasal spray, oral medication or blood transfusion depending on the type of von Willebrand deficiency.

But patients are normally advised against engaging in high impact activities that may cause injury. Because of the clotting factor deficiency, deep cuts may take long to stop and worse, may lead to death by blood loss like my mother. Von Willebrand Disease patients are also prone to internal bleeding.

In von Willebrand Disease, according to Dr. Chua, it's the patient's quality of life that suffers. "They have to contend with constant bleeding. They may feel weak or they may acquire other diseases as a result of the low immunity," she said.

Prior to any medical or dental procedure, patients are also advised to see their hematologist for proper treatment to regulate clotting and prevent blood loss.

So, if you suspect someone in your family has a clotting problem like von Willebrand Disease, don't waste time. See a hematologist. It's always better safe than sorry. (ate)

God is good all the time!

Now faith is being sure of what we hope for and certain of what we do not see.-- Hebrews 1:11

After three long months of waiting, we finally got the results of the tests Star and I had in Hongkong. And it's not so good. For those who just stumbled into my blog, our youngest daughter had nose bleeding episodes since she was a baby. Last year, it became so frequent (almost daily) and after many trips to different doctors we finally found a hematologist who told us that our daughter might have Von Willebrand's Disease. VWD is a hereditary bleeding disorder similar to hemophilia. Though considered the most common bleeding disorder, it happens to about one in three million.

As you probably guessed by now, the results showed that both me and my daughter have VWD (Type 2M). While only my daughter was advised to take the tests, the doctor in Hongkong decided test me as well since VWD is hereditary.

We were advised to go back to Hongkong for new tests as well as for treatment. Since it's hereditary (which was likely the cause of my mother's death at 51), my husband and I are praying to be able to have our two other kids tested soon.

The results came at a time when things seemed to be so quiet. So quiet for comfort, in fact, that I had a feeling something was on the way. And because of that, I had been "negotiating" with the Lord the past few weeks not to make it so hard. Really, when things become quite comfortable, I get uneasy because I know the Lord is just preparing to take us to another level.

We've been through a lot to still doubt God's faithfulness. He is our Jehovah Jireh who provides for all our needs. He is our Jehovah Rapha, our Healer. And while it's a bit prohibitive for us, on a human point of view, to be perennially going abroad for treatments, we never doubt He will provide for us in whatever way He wills -- including divine healing. Nothing is impossible with Him.

It's such a comfort (and a privilege as well) to hear from a great man of God, Rev. Abu Bako, who recently came to give exhortation on the mandate of Christians in nation building. As Christians (and therefore God's representatives), Rev. Abu said, we should do what God mandated man to do -- have complete authority over the earth.(Genesis 1:26)

So what's the connection between nation building and our disease, you might wonder?

Well, being parents to three premature kids who are always in and out of the hospital, my husband and I have been lamenting how bad our health system is. Even government hospitals can be prohibitive for people who are earning minimum wages.

When we were told our daughter might have VWD, we found out that even the best hospitals in the country don't have facilities to diagnose or treat VWD patients. Even our supposed National Hemophilia Center can't diagnose VWD. Which brings to the point, what if those afflicted can't afford to go abroad for treatment or even diagnosis? Will they just die, like my mother?

I'm sure God allowed this to happen to our family for a good reason. It might not be His perfect will for us, but maybe He is looking for people He could use. Star's hematologist said we should start to lobby with the government that facilities for VWD be made available here. We're praying for God's guidance on this. Whatever it is, may His will be done.

When He allows us to face challenges, He also gives us strength to carry on. Thank God for gifting us with very supportive families and friends who've been faithfully walking with us. As I've said over and over, we wouldn't have survived if not for the prayers and support of the people around us.

Surely, God has planned to prosper us and not to harm us, plans to give us hope a future.

Happy Birthday, Star!

Back in the home front. Today, Star turns 8. Our baby is another year older. I miss the days when I can carry her like a huggy bear. She's always been on the heavy side and so very cuddly indeed. Oh, how time flies! It was election time when I found out I was gonna have another baby, and how it sparked controversy in my former office. Ano, buntis ka na naman?" People would ask me, as if it was hard to imagine a married woman getting pregnant for the third time. And I wasn't even the "top baby maker" in the office.

Among the reporters though, I was the highest pointer, so to speak. Knowing I always had difficult pregnancies (all three kids were premature), my bosses probably foresee I'd be gone again for another 48 years. And true enough, shortly after covering Erap's inagauration at Rizal Park, I experienced bleeding and had to be confined for three days.

Because the previous two pregnancies were between 27 to 32 weeks, the doctor advised me to go on complete bed rest until after the second trimester.

Finally, Star came out this time 8 years ago -- a heavy weight at 4.4 kilos. And to think she came out a month before her due date. Her dad was with me to welcome Star. And how she cried! UHA-UHA-UHA! She had the biggest voice in the world!

We already called her Star even when she was still in my tummy. Her Kuya would talk to her, telling her how excited he and Ate were to play with her. He would tell her stories and tickle my tummy.

Shortly after I gave birth to Star, I tried to apply Kuya Ben and Ate Pia at UP's Child Development Center. But as fate would have it, they didn't get the much sought after slots, instead Star got in.

So it was, Star started going to school by June of 1999. She was barely six months when she was admitted at the Infant Development Program of UP-CDC. Practically, all her life, Star has been in school. Yet, she didn't seem to tire. She has always been enthusiastic about school.

We see her growing up to be a conscientious and strong-willed child, yet obedient and God-fearing. She's so passionate about things. As her teachers say, she lives up to her name -- she is a star. She loves it when I repeatedly tell her she's the prettiest girl "in the whole wide hand of God." (It's her terminology. "Hand of God is bigger than the universe," she tells me. She's right!)

We are so blessed to have Star in our lives. While we weren't really prepared to have another baby, I always tell her I can't imagine life without her. We've learned so many lessons from Star. She is like the child Jesus describes in the Bible -- pure in heart.

Happy birthday to our favorite bunso!