November 28, 2006

Hi everyone,

Lindsey is doing really well. The doctor has dropped her office visits to twice a week. All her numbers are going up everyday. She is slowing down on transfusions. Her platelets are over 100,000! Her red blood is just over the threshold for needing a transfusion. She is still dealing with the side effects from the medication.

Right now she does not need donations of Platelets and Blood.

If you would like to do something for Lindsey and all whom are inflicted with leukemia, we have set up a fund at Sloan Kettering that will go directly to the Leukemia Research Team. Please make checks payable to Memorial Sloan Kettering Cancer Center and in the memo section mark Lindsey Brass Fund and mail all gifts to:

Ms. Katie Kotkins
Memorial Sloan Kettering Cancer Center
633 Third Avenue, 28th Floor New York, NY 10017

Katie is also available to answer any questions you may have. Please feel free to contact her directly at (646) 227-2511 or Kotkinsk@mkscc.org.

Thank you for all your support and we hope you will join us in this effort to raise money for Leukemia research.

Thanks again,

Barbara, David and Lindsey

October 26, 2006

Dear Friends,

We are finally going home after 7 weeks in isolation, though Lindsey will go back and forth to the hospital every other day for outpatient testing, medicines and transfusions. Please continue your donations of blood and platelets as her treatment/recovery period will be ongoing for the next six months to a year.

As you know, Lindsey has been battling Leukemia since April of 2005. Today, after overcoming innumerable challenges, hospitalizations, and a stem cell transplant, we as a family are asking you to help us give back to Memorial Sloan-Kettering Cancer Center (MSKCC) in Lindsey’s honor.

You have all played a huge role in our fight to date by so generously donating blood and platelets, supporting our search for a stem cell donor, as well as your expressions of concern and encouragement. Thank you!

Our Doctors at MSKCC are currently working on numerous investigational approaches, by means of clinical trials, to improve the treatment of AML. For example, they are working to refine combination chemotherapy, investigate new transplantation approaches, and identify what causes Leukemic cells to multiply.

We would like to raise funds in honor of Lindsey and her amazing attitude as she bravely fights this terrible disease. All gifts will be directed to the ongoing research conducted by the team of doctors who have treated Lindsey.

Please mail all gifts to:
Katie Kotkins
Memorial Sloan-Kettering Cancer Center
633 3rd Avenue, 28th Floor
New York, NY 10017

Katie is also available to answer any questions you may have. Please feel free to contact her directly at (646) 227-2511 or kotkinsk@mkscc.org.

We hope that you will join us in this effort and thank you again for all of your support during this challenging time.

Warmest wishes,
The Brass Family

October 12, 2006

Hi everyone,

Finally some good news to report. Today we got the results of last Thursday's Bone Marrow test. They have successfully grafted the umbilical cord blood to her bone marrow. Her white blood count is 1,700. 7,000 is normal. She is on her way to recovery!

Last Saturday her triple port in her chest split and blood was spurting out, quite frightening. They clamped it shut and accessed her single port in her chest. This meant the only I.V. medicine, anti rejection drug, was going into her mediport, whereas she had three lines going simultaneously with other helpful drugs. As it was Saturday, they called in a surgeon to remove the broken triple port and place a new one on her other side. They were worried as her white blood counts were low for operating. But we didn't have a choice. She was stable after the procedure and on Tuesday her counts miraculously moved up to 1000! Still feeling very ill and hurting from this procedure, we thought she was probably going to have to stay another month, very depressing. Then Wednesday came and we had all this good news.

Now that her white blood cells are coming up , her body will start to repair itself. She has not eaten and has been sleeping most of the time. They will not release her until she eats and can move around better. So we have some more recovery time to spend here.

When she is released, she has to come back to the hospital frequently for her transfusions and I.V. medicines. So please continue to give blood and platelets. We couldn't have done this without you!

Thank you for your continued prayers.

Fondly,

Lindsey, Barbara & David

September 10, 2006

Lindsey is back in the hospital, and needs blood and platelets immediately. If you live in the New York City area, you can make a directed donation for Lindsey, regardless of your blood type.

If you donate whole blood, Lindsey will get your red blood cells, and your plasma will be given to someone who matches your blood type. You can donate whole blood every 56 days.

Because platelets are not type-specific, Lindsey will get your platelets no matter your blood type. You can donate platelets twice within a 7-day period if there is at least 72 hours between donations. You may donate up to 24 times a year.

Nothing will be wasted; anything Lindsey doesn't use will be given to another patient in need. Donations must be made at Sloan Kettering Cancer Center in Manhattan. To make an appointment, please call Mary Thomas at 212-639-3335. When you leave a message for Mary speak clearly and make sure you say you are calling to donate for Lindsey Brass. For more information visit the Support section.

thank you so much for meeting this critical need,
The Brasses

September 8, 2006

Hi Everyone,

We are back in the hospital since Wednesday for a transplant. Unfortunately, the doctors said we won't find an unrelated donor because of my genetic coding. There were too many mismatches.

Luckily, we found a good match in the umbilical cord bank. We are part of the double cord blood transplant trial. The doctor that wrote the protocol is now with Sloan and is head of the department. We started Chemo on Thursday which will finish Saturday, then four days of radiation. My transplant will be on Thursday.

We are in isolation, we have to be very cautious, so we are not having visitors.

We want to thank everyone for helping with and singing up for the donor drive.

We want to thank you all for your kindness, caring and support.

The Brasses

August 16, 2006

Thank to everyone for making our Long Island Bone Marrow drive an incredible success - with only 5 days to plan, promote, and prepare, 288 donors registered in 4 hours! The test kits are winging their way back to the Gift of Life Bone Marrow Foundation where they will be processed and entered into the database to be matched against Lindsey and the hundreds of others who are searching for a donor. Special thanks to Congregation Beth Torah, Newsday, and all of the volunteers who worked so efficiently and professionally!

The Bar Night after the drive was a huge success as well, raising over $6,000 for the Gift of Life Foundation, earmarked for testing on Lindsey's behalf.

Many, many thanks to everyone for your help and support,
The Brass Family

July 28, 2006

So my Doc says that barring anything crazy happening - I'm going home tomorrow! He wants to take me off antibiotics today and make sure my blood counts are OK tomorrow. I probably won't get out of here until after 5pm - it always takes a while - but I'll take it!

I'll have to come in Tuesday for a check up and as soon as my platelets are up high enough I'll be scheduled for an OMAYA implant, which is like the port in my chest but it will be on the top of my head. Gross - I know, but my hair will grow over it and it should be small enough where you won't see it (which is good since they don't take it out...ever). Once the port heals, I'll be getting chemo to the brain to treat the leukemia in the spinal fluid. They do it to the brain because that's where the spinal fluid is made. My Doc said the chemo will be done as an outpatient - but I'm not sure how often. Anyway, point is - I'M GOIN' HOME!

July 21, 2006

So my doc just left and said that he hasn't seen a good enough match yet, but he hasn't seen all the 9 - maybe only 4 or 5. So i'm gonna try to step up the fundraising... he said we might just be counting on the drive... but i also know that the gift of life is doing drives all over the place so I feel a little better. I can't tell you how much it means to me that everyone got on this so fast. the doctors don't like to waste time. At this point we really don't know how long I can stay in remission (if at all). The other good news is he likes to do about 4 weeks of building up strength before the transplant. AND I will have a break between this chemo and when they go back to the spinal fluid. mixed emotions right now.

July 18, 2006

There's no new update, but I'm feeling OK. Miserable with these side effects and don't feel much like chatting or being in a good mood. I'm saving all my strength. I'm walking so much better and it's getting better every day. We're playing the waiting game - not sure when we're leaving or what the very next step will be.

What we do know is that I will be having a stem cell transplant in the future... but we're looking for a match. My wonderful friend (some of you know her) Becca and her sister and husband have set up a website for me. www.matchlindsey.org

This website is to help with the Bone Marrow Drive that my fabulous friend Becca is coordinating with Gift of Life.

So if you check out the website you will see what is in the making. For the most part each link on the left has a small paragraph except the "donor education" which is long but interesting. My friends will be posting future updates there as well. If you have questions about the transplant and matches - please don't ask me. It's difficult to say over and over and it makes me anxious. There are great links on the website!

If anyone is interested in helping with fundraising, marketing ideas, with the actual drive (which looks like it will be Wednesday August 30 and Thursday August 31), or if you have any ideas or suggestions, email volunteer@matchlindsey.org

Anyway, I'll let you get to it. Thanks for all the emails and blood products and the friends with the blood products. The website will be updated when I have something to new to share!

Thanks for your support =)

Lindsey

July 2, 2006

I'm sorry for being so distant but I have not been feeling well at all. I finished radiation to my brain, but they stopped the spinal tap treatments because they found the leukemia in my bone marrow again, which they need to treat immediately. I have been on such a high dose of steroids for the radiation that I can barely walk. I have a hard time moving anything from my abdomen down. It's so exhausting I can barely talk.

So I talked them into letting me out Friday afternoon for a very short weekend. We are returning on Monday to begin intense chemotherapy like I had last year. I'll probably be in for a month or so. The idea is to get me into remission again so I can have a stem cell transplant (which is the same as a bone marrow transplant) as soon as we find a match. They have started a search in the general database and my first cousins have been tested (but I won't know for another 2 weeks if they are a match).

I appreciate all the phone calls and emails and will let you know when I am up for visitors. I'm still not sure what to expect, but trying to keep my sense of humor =)

Lindsey

June 15, 2006

Dear Family and Friends:

Well, I thought I was done writing these updates, but it's not over yet. I am back in the hospital this week. I hadn't been feeling well and I knew something was wrong. I was having muscle aches that kept me up all night and got worse and I also became increasingly off balanced which prompted me to go to urgent care at the hospital. I was pretty much walking like a drunk!

I've been in the hospital all week and have officially relapsed. It's leukemia again, but this time they found it in my spinal fluid (I had a spinal tap on tuesday) and the fluid around my brain (spinal fluid is made in the brain and travels down around the spine). This means I will need radiation to my brain to eradicate any leukemia in the brain tissue and chemotherapy to the area in the brain where the fluid is made and down the spine. I've already started chemo and radiation as an in-patient and luckily will be able to continue as an out-patient next week.

I have three tattoos on my head to make sure I get radiated in the correct areas (and of course one of the dots is in between my eyebrows! - but looks like a freckle and could be covered with make up if necessary). After radiation I will be getting a port on the top of my head in order to put chemo directly into the reservoir where the spinal fluid is created.

After this is taken care of, I will receive one dose of chemo like I was getting the first time around (the doctor hasn't decided what kind or when - it all depends on how this treatment goes) and then a few months after that I will be getting a stem cell transplant (which is the same as a bone marrow transplant, but the language used is stem cell). They recommend getting first cousins tested only. If family is going to be a match, it will most likely be a first cousin. We are also searching the national data-base of donors. Someone from the hospital should be coming to talk to us about this soon.

On the brighter side, my spinal fluid is clear, there are no masses - which means we caught this early. This treatment shouldn't take as long as my last leukemia treatment either. The worst side effect of radiation they said was fatigue - puh! been there, done that. And my blood counts are normal and they don't foresee needing any transfusions during this treatment.

So I have a long bunch of months ahead and I'll be putting off my law career AGAIN. That's the update for now and I'll be keeping you all in the loop.

Lindsey