Everything you wanted to know about registering for a donation: Information Regarding the Be The Match Marrow Registry (www.bethematch.org)

Be The Match Mission:

Be The Match Registry services patients in need of a marrow transplant who do not have a matching donor in their family. These patients need to find a matching unrelated donor that is willing to donate stem cells on their behalf.

Who does Be The Match service?
Be The Match helps the 10,000 patients a year that suffer from leukemia, lymphoma or a variety of bone marrow functioning diseases that need a marrow transplant from an unrelated donor. Only 30% of patients in need of a marrow transplant have a matching donor in their family.

What is bone marrow?
Bone marrow is the soft tissue inside of the bones that produces all of the body’s blood cells. When a donation takes place, we are targeting the blood stem cells the bone marrow produces. Blood stem cells are blood cells in their infancy; they have not become a red cell, platelet or white cell yet.

How does someone register?
A consent form is filled out consisting of basic contact information, alternate contact information and some medical evaluation questions. A cheek swab sample is then given from the inside of the mouth. If the donor has health insurance from Rhode Island, Massachusetts, Connecticut or New Hampshire, the donor’s insurance information is taken at the time of registration. RI, MA, CT & NH have all passed state legislation requiring health insurance companies in those states to cover the cost of the HLA typing. We charge $112 for the typing and processing of the swabs. If a donor has insurance from a different state or does not have insurance; our sponsor, Michael’s Fund of Fall River, covers the HLA typing cost.

From the cheek swab samples, a lab performs HLA typing and the donor’s HLA typing is posted on the Be The Match Registry. The donor is contacted if they ever look like a potential match for a patient in need.

What happens if someone is a potential match?
At that time a blood sample is taken and a series of health history questions are asked. The blood sample is then sent to the transplant center where the patient is receiving their treatment. Further HLA typing is done and it is determined from the blood sample whether or not the donor is the best match for the patient.

How does a donor donate?
A. 75% of the time donors donate peripheral blood stem cells (PBSC). This is a non-surgical, out-patient procedure. The donor receives an injection daily for 5 days of a drug that increases the number of blood stem cells in the blood stream. On the 5th day, the donor’s blood is removed through a needle in one arm and passed through a machine that separates out the blood stem cells. The remaining blood is returned to the donor in the other arm.

B. 25% of the time donors donate through a surgical procedure which is usually an out-patient procedure. The donor is under anesthesia and the doctor uses a needle & syringe to withdraw the blood stem cells from the back of the pelvic bone.

**Donors have the final say as to which collection method is used.
Find out more before the event http://marrow.org/Home.aspx

Featured Comedian
Claudia Stavola
www.claudiacomedy.com

Featured Comedian
Rich Seethaler

Emcee
Mike McKenna

We have had a bead made just for Comedy for the Cure. Beads are just $26 each and can be pre-ordered by going to our support page and paying or mailing a check made out to Colin Wilson at 109 Pettengill Rd Marlborough, CT 06447. Please specify that the check is for a bead and not tickets. The beads should be ready in time for valentines day or can be picked up at the comedy show, but if not they will be mailed to you. If you cannot attend the comedy show but still want to buy a bead, that would be great. I will also mail your bead to you as well.

www.curechildhoodcancer.ning.com/

Paul Bond

Also featured again this year will be Mike McKenna

So you might be wondering about our logo. The logo was created by Vanessa Valentine. Vanessa is a very creative Graphic Designer and close friend. The story behind the logo comes from a book called Water Bugs and Dragon Flies by Doris Stickney.

This was a book given to us at the hospital soon after Dillon died. A social worker gave it to us to help explain things to Grace and Emma. At the time we were like seriously this book is going to help. Are you serious? What we didn’t know is that this is an amazing little book that for our family has helped tremendously.

The short version is that there are a few water bugs living under water that have noticed that every so often one of their friends climbs up a reed and vanishes. They make a pact that which ever one of them is the first to go has to come back and tell them what happens. So one day sure enough one of the friends finds him self climbing up a stalk and isn’t sure why but knows he must. When he gets to the top he falls a sleep and awakes as a dragon fly. He remembers what he must do for his friends, but when he swoops down to the water he realizes that he cannot go back. Each of his friends will join him some day but must do so when it is their time.

So with this in mind dragon flies are all over are house now from shower curtains to shirts to paintings. Vanessa took this fact from us to combine it with a microphone and create a logo that is much more than just a logo for us.

When I say almost never, I am talking about roughly a dozen diagnosed cases world wide each year. I took nearly 2 months to actually diagnose. We visited hospitals in Hartford, Boston, Philadelphia and Maryland. Our doctors consulted with hospitals all over the country and found two Doctors that had actually seen this in children in their careers spanning 30yrs. The disease presents many of the same symptoms of various Leukemias and that was what confused Doctors. It is believed that there are actually many more cases world wide that are not diagnosed properly. Do a google search. You’ll be amazed how little information comes up.

It was decided (guessed) that the best course of action was a bone marrow transplant. That isn’t an insult to the team of Doctors but rather an indication that there just wasn’t enough info to know if this was what would work. Leaving out a lot of details, Dillon was admitted to Children’s Hospital in Hartford on December 12th. He spent most of December and January in patient. He was home for much of February while we were waiting for a donor match. He was re admitted at the beginning of March and after having his spleen removed he spent 12 days in ICU on a ventilator. This brought us to early April when a match was found and he was transferred to Boston. He started a crazy regime of chemo therapy and on April 18th, 4 days shy of his transplant his heart stopped and they were unable to save him. I’m writing this in such a clinical, cold way but it is the only way to do it. It gives me chills and tears just writing down the basic information.

A friend, Rich Seethaler, suggested creating a fund raiser for the Leukemia and Lymphoma society and it seemed like a great idea to keep Dillon’s memory alive.Why the Leukemia society? Well it’s the closest thing to what Dillon died from. There also isn’t any one really doing anything about myelofibrosis.