Saturday, August 27, 2005
Sunday, August 21, 2005
We stopped in St. Michaels on the way home from the beach. I borrowed these pictures off the wall in the kitchen. This first one is everyone. I wasn't really digging the whole "wear the same clothes as everyone" thing, but sometimes you just have to go along with everyone.
This picture is so great because you are laughing. You and Michael used to crack each other up. I love seeing that you are having such a good chuckle.
Noah and Joe haven't even been born yet in these.
Jack misses you. He is acting a little off lately. He gets mad a Joe a lot. We're not sure if it is just normal big brother getting bugged by little brother (who can be a real pain sometimes) or if it is because of you somehow. It is really hard to know. We ask him straight up and he says no. Mom and I think it might help for him to go see the person he used to talk with right after you died.
Mom thinks that maybe everything will settle out when he goes back to school. I hope so.
Saturday, August 20, 2005
We went on vacation to -- where else -- the beach. We rented a house in Rehoboth. It took us a little time to get there, though. First we went stayed at Aunt Abby and Uncle Andy's house and then we moved a couple blocks over to the house we rented.
These are some pictures that I took. This first one is Joe sleeping on my tummy (yummy). I can make him fall asleep by stroking his hair forward on the front of his head. I seem to remember a movie where the someone has the ability to make wild animals fall asleep by touching them the right way... or something like that.
Sam Shoyer came and stayed with us. His brothers were with Paula at other friends in Rehoboth. I am glad Jack could have his buddy with him to share his vacation. We went to the boardwalk and Candy Kitchen. The guys got wax bottles.
We went to Jungle Jim's water park. There was a water park or at least a big slide in St. Louis Park in Minneapolis. I kept saying I wanted to go, but we never ended up doing it.
During the week after Sam Shoyer left we went back over to Aunt Abby's and went to the pool at her house and then to beach with all of your cousins. They have a lot of good toys for the beach. You can see all the surf boards. Uncle Andy has a pretty cool toy too. You rode in the yellow Bronco once when we were down there. It is perfect.
Michael and Jack had a good time together. I think Michael misses you.
Hey, check this little dude out. That is your brand new cousin, Noah. I haven't seen him for a while. He is three months old. Joe is now the older cousin. Hopefully they'll be buddies. Joe is really close with Joshua now. They have a very sweet friendship. They play together and hang out.
Here is Joshua skimboarding. Both he and Michael are really good at all of the beach and water sports.
Joe decided to try his hand at skimboarding. He looks like he might just be able to do it, doesn't he.
I am really proud of two things - one, that Michael is a really good surfer, and two, that I was able to get a picture of him getting up on his board. There is a lot of waiting around in surfing. You wait for the right wave. It takes a long time at Rehoboth.
We also hung out a lot with Richard, Helaine, Jake and Abby. Jake is all grown up now. This is him skimboarding. I am bummed that I can't picture you being as big and grown up as your friends, like Jake. I wonder what it will be like when I see Ari again. I haven't seen him or Simon almost all summer.
We played football. Your little brother Joe is quite the athlete. He is a lot like you that way.
Jack keeps getting more handsome. I am in love with him.
Jack was showing some serious bravery - helped by Michael. The two of them went on the Sea Dragon and then we all went on Chaos together. We are at a whole new level of rides at Funland.
A good thing that Joe likes the calm rides. Mom will be bummed in a couple of years when he only wants to do the scary ones. I'll go on Paratrooper with her.
We also went seining, which we have done on past vacations with Hugh and Liam. You go out into the Delaware Bay and use a net to catch fish and other sea creatures and then take a close up look.
I learned a lot about horseshoe crabs. We also caught a puffer fish and some other cool things.
This is the photo that I started taking with you. I have done it a few times with Joe now. I wonder how much longer I'll be carrying him on my shoulders. Hopefully we have at least one more summer left.
Joe tells me all the time that he loves me "to Saturan and back." If you didn't figure it out, he means "Saturn" the planet. Joe has a funny way of saying some things. I don't correct him because I think it is cute and he'll figure it out after a while. I don't see him being in college, listing all of the planets and saying "Saturan."
Joe is just a really sweet little guy. I hope we have a lot of summers left of him telling me how much he loves me. I'll carry him on my shoulders and his feet never have to hit the ground until he is a grown man if he'll just keep telling me how much he loves me.
This is Mom and you on the boardwalk. I think you are tickling her with a feather.
Wednesday, August 17, 2005
Kind of a wacky article, but your name is in it.
Fewer red blood cells
By Jen Waters
August 16, 2005
Laurie Strongin is holding out hope for many critically ill children.
In honor of her son, Henry, who died in 2002 at age 7 of Fanconi anemia, she started the Hope for Henry Foundation, a nonprofit organization that brings laughter and smiles into the lives of children with life-threatening illnesses.
With the release of "Harry Potter and the Half-Blood Prince," Ms. Strongin, who lives in Northwest, hosted Harry Potter book parties at Georgetown University Hospital in Northwest and Hackensack University Medical Center in New Jersey.
"Henry's disease was different than some of the other anemias because it was absolutely life-threatening," Ms. Strongin says. "It was as serious as cancer."
Although the average person usually associates anemia with low iron levels, there are close to 100 different types of anemia with many causes, including serious disease, blood loss, genetic predisposition, side-effects of medication or vitamin deficiencies. Depending on the form of the disease, it can range from mild to severe.
Although there are differences in the severity of the anemias, they all lead to the same endpoint -- the number of red blood cells in the body decreases, says Dr. Sophie Lanzkron, director of the Sickle Cell Center for Adults at Johns Hopkins Hospital in Baltimore.
"If you're anemic, you shouldn't just let it go," Dr. Lanzkron says. "You can't just say, 'I've been anemic all my life.' "
Generally, anemia is caused by inadequate production or increased destruction of red blood cells, says Dr. Lawrence Lessin, medical director of the Washington Cancer Institute at Washington Hospital Center in Northwest.
In patients with deficient amounts of iron, vitamin B12 or folic acid, red blood cell formation usually is impaired, he says.
Red blood cell forma tion also can be sup pressed by cancers, in fection, inflammatory diseases, chemical radia tion, medication, and viruses, such as HIV, hepatitis and cytomegalovirus.
Fanconi anemia, an inherited anemia, involves the failure of bone marrow to produce all types of blood cells. Many children with the disease have bone marrow transplants.
Increased red blood cell destruction, which generally is not improved by additional iron supplementation and can possibly make it worse, can be seen in association with sickle cell disease, Cooley's anemia, spherocytosis, hypersplenism and parasites, such as malaria.
"It's an extremely complicated issue, but a very common problem," Dr. Lessin says. "Each time you find a case it leads you to look further to the true root cause."
By American standards, more than half the people in the world are anemic, Dr. Lessin says. People in Third World countries especially suffer from iron loss or uncompensated blood loss, for reasons such as giving birth or parasites.
However, in the United States, at least 25 percent of people entering the hospital are anemic, and physicians must treat the underlying disease to relieve the anemia, Dr. Lessin says. Diagnosis is made through a simple blood test.
Sickle cell disease is a severe form of anemia that is commonly inherited by people of African descent, says William P. Winter, deputy director of the Howard University Center for Sickle Cell Disease in Northwest. He holds a doctorate in biochemical genetics.
Since the sickle cell gene originated in Africa, it is believed that the condition is the body's way of adapting in order to survive malaria, he says.
A person who has one normal gene and one sickle cell gene has the sickle trait. If the person's spouse also carried the trait, the couple's children could inherit the disease.
The disease involves an abnormal structure of the hemoglobin, which is the oxygen-carrying protein that makes blood red, Mr. Winter says. In the process of delivering oxygen to the tissues, the red blood cells change shape, becoming long and thin, he says. Since they are abnormal, they are destroyed in the liver, causing anemia.
"If a cell is old and feeble and not doing its job, it gets destroyed," Mr. Winter says. "That's normal life. In sickle cell, they are being broken down much faster than the body can replace them."
Most anemias cause people to be tired and unable to perform physical tasks, which affects the person's quality of life, he says.
Curing sickle cell disease is like trying to "cure" someone of their eye color, Mr. Winter says. With a genetic disease, most doctors focus on sustaining the patient's life.
Blood transfusions often help, as long as the patient doesn't become allergic to the transfused blood, Mr. Winter says. In cases of stroke, damaged liver or acute chest syndrome, blood transfusions are particularly important. Also, the drug Hydroxyurea can help prevent episodes of pain associated with sickle cell disease.
In some cases of sickle cell disease, a bone marrow transplant can be extremely effective when it's accepted by the body, he says. A bone marrow transplant allows the body to make a new set of red blood cells.
"The body could reject the bone marrow," Mr. Winter says. "It all has to do with having a perfect donor."
Blood transfusions are almost always necessary when treating Cooley's anemia, also known as thalassemia major, says Dr. Vasili Berdoukas, honorary pediatrician at the Sydney Children's Hospital in Australia. He is a leading authority in clinical care and research in thalassemia. He currently lives in Northwest.
The inherited condition usually affects people of Mediterranean, Northern African, Middle Eastern and Asian heritage. Similar to sickle cell disease, the adaptation of the cells in the carrier state, known as thalassemia minor, is thought to protect a child against dying from malaria.
Through the blood transfusions, people with Cooley's anemia acquire more iron than they need, he says. Therefore, patients also need treatment to remove iron. Otherwise, it could cause organ damage, especially to the heart.
"Because iron is scarce, bodies are made to conserve iron," Dr. Berdoukas says. "We keep it and have no mechanism for getting rid of it."
In order to remove iron, Pranav Saha, 25, of Odenton, Md., sleeps with a needle in his stomach that is attached to a pump delivering the medication Desferal. Patients are waiting for a drug that can be taken by mouth to remove the iron.
"A lot of times, thalassemia can be mistaken for regular iron deficiency," Mr. Saha says. "Giving iron is exactly the opposite of what you should be doing. You can't assume that someone has an iron deficiency."
Copyright © 2005 News World Communications, Inc. All rights reserved.
Saturday, August 13, 2005
Friday, August 12, 2005
Guess who we saw last night. The Nashes came into town for a few hours. They were on their way to Camp Sunshine. Remember Camp Sunshine? It was the Camp up in Maine where we went with all of the other Fanconi anemia families. They had fun things for the kids to do and the parents got to meet with all of the doctors.
It was great to see Lisa, Jack, Adam, Delaney and especially Molly. We had dinner and then they had to rush back to the airport. I gave Molly a big hug (and a Hope for Henry wristband, which she was very psyched about) and told her that she is very special to us. She is.
When I talked to her I felt like I was talking to you. She is really grown up for eleven years old. She has been through so much. But she looks good and sounds good. She went to sleep away camp this summer. Can you believe it. How great is that.
I didn't want the hug to end.
This is a picture of all of us at the hospital in Minnesota the day we left. Molly still had a way to go but we were all done with the transplant. Or at least that is what we were hoping.
I think you weren't much in the mood for photos.
This picture of you and Molly was made from two different photos pieced together.
This was the whole crew last night. As you can see, Adam has grown up into a big boy. And both Joe and Delaney are part of our families. They had not been born yet when you and Molly were getting your transplants.
Although it was awesome seeing everyone, it is also very sad. Nothing could remind us more that what we did to save your life didn't work. The fact that you are not in the photo is killing me.
I think I told you how when I get sad it feels like I have the wind knocked out of me. You had the wind knocked out of you that time you were a teacher's helper at the Gan. They called the rescue squad for you. I kinda wish there was some kind of rescue squad for how I feel.