April 2007 Archives

Dr. Geha invited us to one of his lectures last April 19th. to talk about our story to first year medical students.

Dear Andres,

On behalf of our department at Harvard Medical School and the First Year Medical students, I would like to offer my deepest thanks to you and your family for participating in our “Clinical Immunology Exercise” yesterday morning.

Students were truly impacted by the experience. I saw students hugging or crying in reaction to the day’s events. Rarely in my brief time here have I seen such a profound reaction to an event related to a course, but students were indeed moved. I spoke with many who mentioned your session in particular was greatly personal and informative. They believed the format was more inviting for a personal setting (typically, students here patients discuss their situation in an amphitheater. Here it was clearly more personal).

Your son and your entire family touched the first year students here at the medical school. The department in which I work is small but has direct contact with most first and second year students and we are almost always in tune to what they do and do not like about courses. This is something the students most certainly enjoyed being a part of.

Because student interaction with patients and first hand experiences with real life clinical issues are so vital, you provided an absolutely essential element to their education here at HMS. I was at a meeting the day before where many representative students urged more events such as these. From yesterday’s reaction, we could see why they require such interaction.

Again, thank you greatly and although I wish I could forward you a more proper thank you (snail mail is slow but at least a little more personal), I hope that your experience was also rewarding and enriching. On behalf of the Course Directors, Dr. Arlene Sharp, Dr. Andy Lichtman and Dr. Alex McAdam, we offer our deepest regards and thanks. We hope to have more forums in the future where you can tell your story in a beautiful and educational way.

Please send along our gracious thank you to all of your family as well.

Sincerely,

Micah Nemiroff

Slowly but surely I finished the Boston Marathon. I had to deal with leg cramps since mile 10.

I finished in 5 hours and 11 minutes. Number 20570
Victor also finished and he was faster, he finished in 4 hours and 36 minutes.

Mark also finished in 5 hours and 7 minutes.

Incredible experience!

Right now I cant say that I would do it again...
Highlights of my race were:

Cheers at Wellesley College
Children's Hospital Cheering section at Wellesley, I saw Andy, Sofia, Paulina, Nat, Mom and Dad.
Boston College cheering section.
Mile 25 running with Kelli
Finish line
Meeting Victor at the Children's Hospital Boston Massage Suite

Praying for Simon.

This from Simon's Mom,

I cannot believe I am even posting this, almost a year to the date of us going home last year after transplant number one, I am asking that you pray long and hard for our son this weekend at one of the holiest times of the year. I am devasted to tell you all that we just found out today that Simons donor cells are declining...
We now only have 85% donor cells overall. We are angry, upset and saddened. I don't know what else we can do.

Heavy rains and windy conditions on race day..

WOHOOO!!

This message from the Boston Athletic Association:

Wednesday, April 11 - As the Boston Athletic Association continues to make preparations for Monday's Boston Marathon, we are monitoring the upcoming weather conditions forecast for this area. Based on the National Weather Service's most recent report and in cooperation with the Executive Office of Public Safety (Commonwealth of Massachusetts) and the Massachusetts Emergency Management Agency, together with the eight cities and towns along the 26.2-mile marathon route, we are planning for likely heavy rain and windy conditions on race day. However, all race day plans remain the same. The Boston Athletic Association advises participants in Monday's race to plan accordingly for their run, bringing with them gear and apparel to suit the conditions. The B.A.A. will continue to update its web site as necessary.

This message from my coach Annie Craddock:

It's still to early to discuss this, as the weather may change by
Monday, but I know you have all heard about the impending rain for the Marathon. DON'T PANIC!
Some things to think about:
You are going to get wet. No doubt about it. If you dress properly, you can have as successful a race as if it were dry. You shouldn't run in cotton anyway, but absolutely do not plan to
wear cotton in the rain. It will get wet, make you cold and weigh you down. If it's rainy and 40 degrees, you'll probably want to wear something on your legs. Not to be repetitive...but no cotton. You may want to wear a lightweight hat to keep the rain out of your eyes. Your feet will swell and will look like you've been in the tub too long by the time you're done. You'll want to cover them in Body Glide, aquaphor or vaseline (or any similar product)to protect them from the water and prevent blisters. Just slather the stuff on and put your socks over it and then your sneaks. Feels funny, but you'll get used to it.
You may want to wear a lightweight jacket to protect you from the water, but be sure it's breathable so that you don't overheat. Some folks will want to change their shoes and socks midway, but your chip will be attached, so that won't work. If you change your socks,
they're jsut going to get wet again. Even though you are going to be all wet, you will still need to take in plenty of fluids! Don't forget to drink, and if you miss a water stop, just open your mouth and take a drink. Everyone else is in the same boat, so don't worry! It's not as bad
as you think. This will be an amazing experience either way, you'll just have some better stories to share.

Day + 21 post transplant and had to be transfered to the ICU due to breathing complications.

This from his Dad:

The roller coaster of terror continues. This is the time when you dred each phone call, each lab, each examination, a groan, the twist of his body, the unknown. Because each piece of news could be a gift of relief or complete devastation. You don't know which lot will be dealt at any given moment and that is the true horror of helplessly watching your child struggle for life. Truly, if one could describe hell I think we're living in it at times like this and when Giovanni is doing well its a mixture of bliss shadowed by fear. Fear always in the background luming over your shoulder with its brother terror a shadow above waiting to rush in and engulf you. To shake you to your core, weaken your knees, and send chills through your entire body meeting in your throat a choking knot threatening to consume you with uncontrollable emotions and set you down like a hysterical child.

More via helpgiovanniguglielmo.org here.

210 miles above Earth, Expedition 14 crew member Sunita Williams will attempt to do something no other astronaut has ever done. She will run the Boston Marathon while in orbit.

The 41-year-old plans to run the 26.2-mile race on a treadmill onboard the International Space Station. The Boston Athletic Association has issued Williams bib number 14,000. The bib has been sent electronically to NASA, which has forwarded it to Williams. She’s a Needham, Mass., native and says her reason for running the marathon is simple. “I would like to encourage kids to start making physical fitness part of their daily lives. I thought a big goal like a marathon would help get this message out there.”

More via NASA here.

Mensaje de Victor

Hola,

¡Faltan solo 12 días para el maratón de Boston!

Ya llevamos recaudados $18,600 dólares en lo individual y $962,512 entre todo el equipo “Miles for Miracles”.

Después de más de 6 meses, y más de 500 kilómetros corridos en el entrenamiento me siento listo para llegar a la salida el lunes 16 de abril a las 10 de la mañana. Llegar a la meta es otra historia que se ira resolviendo metro por metro, minuto por minuto. He entrenado bien y todo está a favor para poder terminar el maratón en menos de 5 horas. La incertidumbre de algo que nuca he hecho en mi vida y el tamaño del reto le suman toneladas de emoción. Aunque sus donativos no han hecho más fáciles las levantadas a las 6 de la mañana ni las corridas largas de más de 2 horas, si han hecho más difícil el pensar siquiera en la posibilidad de renunciar.

Si todavía no has donado, ahora es buen momento. No importa el tamaño del donativo, hay contribuciones desde $15 dólares, que son muy agradecidas.

Donar es muy fácil, se puede hacer en línea con cualquier tarjeta de crédito entrando a www.vic4andy.com o si prefieres mándame un mail con los datos de la tarjeta de crédito o llámame al (55) 1019-1069

Para los que no lo pudieron ver, les mando un nuevo link del reportaje que transmitió CBS:

http://www.youtube.com/watch?v=Et4bvtEIVow

Saludos

Victor

This from Jack's Dad:

Yesterday, was the hardest and most difficult day of our lives. Charlotte, Christina and I laid Jack to rest. Jack fought a long and hard battle in his 4 1/2 years on this earth. He was the bravest, strongest man I knew. Jack was laid to rest with full firemen's honors. The show of support from family and friends was incrediblle. In his short time with us he touched the hearts of many. I have been receiving email and comments on this page from so many people far and wide. Jack had an effect worldwide. Dr. Jordan Orange spoke at Jack's funeral and vowed to continue to work for a cure with Jack's inspiration.

More at www.cure4jack.org

This from Simon's Mom:

Believe me I knew nothing about the immune system before Simon and to look at counts and either get happy or worried is something I dread. We all walk around getting colds and things and don't even think of how our systems work to fight them off but when confronted with a situation like this every number sets the mood. Today our platelets are down.

This from Giovanni's Dad:

His vitals are all good but his chest is heaving too much for my comfort. He simply looks uncomfortable, weak, and helpless... A grown man having survived 17 1/2 years of hell through the bowels of two prison systems and I'm scared for my son's life. I'd beg on my hands and knees,sell my soul, any and every temporal possession I own to take his place if anyone could deliver me there.

This from JT's Dad:

I think it’s a combination of an intensive medical routine, fewer hours available for sleep each night, and JT’s lingering symptoms. Whatever it is, JT and I are both tired. Really tired. And I think the cumulative effect of the last six months is finally adding up. Jodi prayed tonight that God would give us the strength to finish the race strong.

Their Future is in Our Hands

March 28, 2007

Dear Friends and Family
I am writing to ask for your support of Children’s Hospital Boston.

As most of you know, I am in remission from cancer. The title of this letter is very much in my mind daily because if the people of yesterday had not been as generous with their time, money and efforts as they had been, I may not have been able to write this letter. The following is a brief history of my involvement with Children’s Hospital and the reason I encourage your generosity:

On March 1, 2005, I went into the hospital to have what I thought would be routine surgery to remove a piece of metal from my stomach. Four days later, I was told that I had traces of cancer (lymphoma) in my colon. As you no doubt can imagine, the initial shock was tough. But I quickly realized that it was far from over, and that it was time to move forward in the positive direction directed by my wonderful team of doctors. While recovering from surgery, it became apparent to me that the tremendous generosity of other people had helped make it possible for me to receive some of the best care in the world. So I made a promise to myself that when I got better, I would become more active in my efforts to help future generations, as others in the past had helped me

Last year, six months after my surgery, I had a chance to achieve my lifelong dream and to help future generations at the same time: I became involved with Children’s Hospital and I had the opportunity to run the 110th Boston marathon with the hospitals Boston’s Marathon Program. The famed Boston Marathon was a dream come true for me. It was a fantastic experience from the first time I met my “patient partner” until the moment I crossed the finish line at Copley Square. My patient partner last year was Andy Trevino. Andy was then six years old and suffered from Primary Immune Deficiency Disorder, a life threatening condition. Andy had spent 650 days (or a third of his life) in the hospital, and the doctors at Children’s had successfully treated him by transplanting DNA from his sister, Sofia. Two years after the transplant, and thanks to Children’s Hospital, Andy is now a healthy 7 ½ year old boy just like all of his classmates.

This year I am again running for Andy, and am also running for a very special little girl named Rachel Blaisdell. Rachel has Brittle Bone Syndrome and has been admitted to the hospital on seventy-seven occasions with broken bones. But even this has not dampened her spirits in any way. Rachel has more spirit and enthusiasm than most people I know. She deals with her ailment like we would a “bad hair day”…like no big deal. A lot of this is because of her personal strength as an individual. But it also comes from the confidence that she and her family feel when they walk through the doors at Children’s Hospital. Children’s makes children feel safe and secure, from the valets out front, to the doctors and nurses in the emergency room and the operating room…and everyone in between. I have experienced that personally when I have brought my children to the emergency room for various reasons. On my last visit, my son received 8 stitches in his lip after falling. Listening to him and the doctor talk was great; he was so comfortable with the doctor he had just met, it was like he was talking to his friends in the schoolyard. As we left the hospital, my son turned to the doctor and said: “You know you are a good guy and I liked coming here.” A true testament to the staff at this wonderful place.

Andy and Rachel do not need your money…but they do encourage you to give generously to Children’s Hospital Boston so that others can benefit from the same kind of excellent care they have experienced. Your contribution will help ensure that patients will continue to receive the best medical care possible, and that children around the world will benefit from the groundbreaking research performed at Children’s everyday. Our hope is that one day, other children may not have to face the suffering that Andy, Rachel and other children endure on a daily basis. Andy, Rachel and these other patients are brave soldiers from whom we can learn much. If we exhibit half of their courage and faith, and give generously to support this amazing cause, we can truly help the families that depend on Children’s to enjoy long and happy lives together.

To accomplish this, I am asking you to help me support the patient care and research missions of Children’s Hospital. With your contribution, you have the ability to improve the lives of many children and their families for years to come.

Today their future is in our hands;
Tomorrow our future is in their hands

Please make your check payable to Children’s Hospital. My ID # is Mark Porter PM0031. Or visit my website www.mark4andy.com and make your donation online.

On behalf of Andy, Rachel and all of the children, thank you for your support.

With best regards,

Mark Porter
www.mark4andy.com