Jasmina's Memorial Service

For those who wish to participate, here are the details for Jasmina's memorial service and viewing posted today on her online journal:

Industria Studios
Sunday, January 31
775 Washington Street
New York, NY 10014

There will be a service for friends and family from 2-3pm.

From 3-5pm there will be an open casket viewing for the public.

In lieu of flowers and to show continued support please make any donations to
One For Jasmina,
P.O. Box 295, NY, NY 10276,
www.OneForJasmina.com and click on the "How to Help" tab.

Rest in peace little angel.

Jasmina Passed Away Tonight :(

Jasmina was only 6 years old when she passed away Jan. 27, 2010. Here she is with her beloved kitty Lucky.

In the space of 1 year Jasmina was diagnosed with Leukemia on January 20th, received a mismatched 9/10 marker transplant in June, then relapsed in September 2009. With the help of supportive transfusions, medicine and more chemo by the third week of October her bone marrow biopsies came back as 0% Leukemic cells. At the end of November Jasmina was rushed back to the hospital suffereing from a swelling of her brain caused by a medication she was taking combined with high blood pressure. By the end of the December the Leukemia was back.

On New Years Eve Thea, Jasmina's mom, found out her Leukemia had split and had become two different types of Leukemia AML and NK. Less then three weeks later the Leukemia had mutated to AMML which is not treatable in post transplant patients.

Jasmina and Thea

Last weekend her online journal said she was having a great time:

"Jasmina had a really nice weekend. She and Isabelle went to see the Tooth Fairy movie on Friday and then Jasmina and Thea ate dinner at a friends house. Saturday Jasmina made delicious strawberry pizza with a friend. On Sunday, Isabelle, Wim and I hung out with her for a few hours. She was happy and in good spirits. Thea's friend brought her adorable puppy, Ruby, over to play with Jasmina and Lucky (her cat). Lucky wasn't so thrilled with this arrangement, which Jasmina found hilarious. It was really nice to hear her laugh so hard."

On Monday, just one day later, Jasmina spiked a fever. On Tuesday x-rays confirmed that she had pneumonia in both lungs. In her weakened condition it was just too much for her little body. The pneumonia didn't respond to the antibiotics and as her breathing became more labored she was moved to ICU. As her lungs began to fill with fluid it became apparent that there was to be no miracle for Jasmina, no happy ending. She was held by her mother and surrounded by loved ones who touched and comforted her. On Wednesday at 7:55 CST Jasmina passed away. Rest in peace little angel :( My thoughts and prayers are with you, your family and friends.

Jasmina lived with 3 kinds of Leukemia, shingles, graft vs. host disease, diabetes, posterior reversible encephalopathy syndrome, high blood pressure and a myriad of conditions and complications caused by the leukemia and the treatments that were saving her life. Through it all she smiled, she laughed, she comforted her mother and enjoyed her life as best as she could. She was easily far more courageous then most of us could ever hope to be in the same circumstance.

It was just a few short weeks ago on December 6th that Jasmina was in the Oval Office of the White House meeting and talking to President Barack Obama thanks to the Make a Wish Foundation. She wanted to talk to the President about helping kids with Leukemia. It was the experience of a life time and in her 6 short years she changed the world. Jasmina helped to raise so much awareness about the need for more people to join the National Marrow Donor Program and received lots of publicity that she put to good use to help spread the word. One of the drives held in her name located a donor for another patient in need. Literally thousands of people joined the registry hoping to help save this precious little girl.

I don't even remember how I found her website but one day last year, shortly after Tami became sick, I stumbled upon it and immediately began checking back, following news articles, even saw new stories about her on tv by chance, and found her online journal where all that she endured and conquered was written down for her many friends and supporters to follow her progress as she fought for her life.

Jasmina's story can be read on her Caring Bridge Journal. CLICK HERE to read her journal day by day. If you register you can even offer condolences to her mom and loved ones in her guestbook.

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If you would like to join the National Marrow Donor Program to try to help another patient in need:

PLEASE CLICK HERE to order a home test kit online

Or CLICK HERE to use the zip code locater to find a live drive near you

Please Say a Prayer for Jasmina

Jasmina has taken a turn for the worse. After her stem cell transplant failed and her Leukemia relapsed her doctors discovered that her Leukemia came back in two different forms, one that is incurable. She had been holding her own until just a couple of days ago when she spiked a fever. She now has Pneumonia in both lungs and her lungs are filling with fluid because her body is not responding to the antibiotics.

This little girl has known pain and suffering no child should ever have to endure :(

She did get to meet President Barack Obama a few weeks ago. And up until a few days ago was having fun with her friends and visitors. But now her condition is critical and she may not be with us for much longer.

My heart is just breaking for her and her mom. Their friend posted in Jasmina's online journal today...

Jasmina's antibiotics are not working so her lungs are filling up with fluids. Her situation right now is critical. The doctors are trying to get the situation under control but Thea will have to make a difficult decision if this does not work.

So please say a prayer for this little girl who is going to be taken from us far too soon...

Tami's Post Stem Cell Transplant Update: Day +206

Just spoke to Tami on the phone tonight. Because her recovery process will continue slowly but steadily, we decided for now we will be updating her blog once a month unless something newsworthy comes up.

Presently she is still feeling quite tired. Her back is finally better and she is doing low intensity core exercises and stretching to help strengthen her back and all of her muscles. It turns out that being sedentary and in bed for weeks and months at a time really messes up your spine and muscles so it will be a while before she really feels better.

She is now experiencing pain in her knees and elbows. Her doctor thinks this may be a side effect of the medication she is on to suppress her immune system to keep her Graft vs. Host Disease (GVHD) under control. They are going to try to wean her off of this medication. That means her joint pain may go away but her GVHD may come back. While definitely unpleasant, it's totally normal for marrow transplant patients to experience GVHD for months or even years post transplant.

Seattle Cancer Care Alliance Hospital, Seattle, WA.

Speaking of her GVHD, you may recall that Tami has had a few bouts with it now. First it attacked her intestines just a few days post transplant and then months later her skin, twice. Recently Tami took an out of town trip to Seattle because she is part of a GVHD clinical trial. Fred Hutchinson is a cancer research center that partners with the Seattle Cancer Care Alliance Hospital. They are leaders in addressing and solving many of the problems transplant patients face due to the participation of their existing patients in their clinical trials. Her doctors there were pleased with her progress and said everything was looking good.

While in Seattle she made a stop at Lululemon. While she was there undergoing her transplant one of the employees at their University Village location befriended her and showed her a lot of kindness so she dropped back by to say hello to Pat. If you're ever in the area be sure to go shop at Lululemon if you're looking for cute and comfy yoga inspired athletic wear.

More great news, her former daily then every other day doctor's appointments have now become once a month visits to see her doctor. Man, it seems like not that long ago when she was in the hospital for weeks and getting platelet transfusions every other day last April.

And last but not least her hair is starting to come back. When I saw Tami in October her hair was just barely beginning to grow back in. She said now she is starting to have sideburns again. That has to feel like some kind of milestone. We were guessing that hair grows at about a half inch to an inch a month so it'll be awhile before her hair is as long as it used to be.

So that's it for now. Until next month!

Upcoming Bone Marrow Donor Drives DC, MA, MD

I wanted to share the upcoming Live Donor Drive Schedule for Swab a Cheek Save a Life. If you have any questions about any of these drives please contact the organization by CLICKING HERE.

Their mission statement?

"Giving Minority Patients a BETTER CHANCE to Find a Bone Marrow Donor"

If you live in these cities or know people who do, can you please spread the word to them about the drive dates and locations so they can tell others? You can share the link to this post on Facebook and/or Twitter:

http://helpingtami.blogspot.com/2010/01/upcoming-bone-marrow-donor-drives-dc-ma.html

And if you aren't already in the donor program but have been thinking about registering, one of these drives could be the perfect time to join.

February 6, 2010 (Saturday)
1:00pm to 3:00pm
The Hope Chinese Language School
Churchill High School – Cafeteria
11300 Gainsborough Road
Potomac, MD

February 19, 2010 (Friday)
6:00pm to 10:00pm
Heritage Café - Ridgeview MS
16600 Raven Rock Drive
Gaithersburg, MD

March 7, 2010 (Sunday)
1:00pm to 6:00pm
Metro West Basketball League
Framingham High School
115 A Street, Framingham, MA

April 14th, 2010 (Wednesday)
3:00pm to 6:00pm
Drive at the Rashi School Parent Teachers Conference
15 Walnut Park, Newton, MA

April 15th, 2010
8:00am to 3:30pm - (Thursday)
Drive at the Rashi School Parent Teachers Conference
15 Walnut Park, Newton, MA

April 18, 2010 (Sunday)
1:00pm to 4:00pm
Washington Hebrew Congregation's Mitzvah Day
3935 Macomb Street NW
Washington, DC

April 21, 2010 (Wednesday)
1:00pm to 3:30pm
Solomon Schechter
1 Commerce Way
Norwood, MA

May 02, 2010 (Sunday)
Time: To Be Announced
Temple Beth Am in Framingham
300 Pleasant Street
Framingham, MA

May 16, 2010 (Sunday)
Time: To Be Announced
Temple Beth David in Westwood
7 Clapboardtree Street
Westwood, MA