I haven't posted much here about our niece lately. If you're friends with me on Facebook, or follow
Sydney's story on CaringBridge you probably know way more. I first posted about her relapse with Leukemia on
Wednesday, Sept. 4, 2013, so let me give you a recap so I can bring you up to date on where we are now.
(Sydney is on the far right, age 7 at the time, picture taken in 2011 during her first fight of Leukemia)
Praise
the Lord that day 36 brought the news of remission once again! Such an
answer to prayers! But regardless, doctors think that a bone marrow
transplant is Sydney's best chance to a cancer free life. The fact that
the Leukemia came back, means it could continue coming back without
this transplant. If she continued to relapse she could reach a point
that some of the chemo drugs would no longer be effective and eventually
no treatment at all could help her. So a bone marrow transplant is in
the works! But that means she needs a donor match. Her 12 year old
brother, Jeremy, was the best chance for a match (and even he had just a
30% chance of being a match). We prayed and prayed that he would be
her match and could be the donor that saved her life. But God's plan is
different than that, and we know His plan is always good. He was not
his sister's match.
So
that means someone else out there is. The doctors have turned to the
national bone marrow registry and have pulled up 20 live donors who are
an initial match. 20!??!? Can you imagine the life of your child in
the hands of 20 strangers...who still have to contacted, still have to
agree to further testing, and they still have to end up an exact match.
Right now those 20 are just matching Sydney's initial criteria. So the
search is on. And in the mean time, many of Sydney's family and
friends are rallying behind them to get as many more names on that
registry list as possible! The National Bone Marrow Registry isn't
something that is widely known. I had never myself even really known
about it until now. But there are so many other people besides Sydney
waiting for a bone marrow donor to surface in order to give them their
life back.
So
that brings us to where we are today. There are big and small bone
marrow drives happening all over the place in honor of Sydney...Kansas
City, Michigan, California, Newton, Wichita and other places. The goal
is simple...the more people we can get added to this registry, the
better chances that one of them will be Sydney's match. It is crazy to
me to sit here and think that I could be her match, that one of my
friends could be her match, or that someone that walks through our
community bone marrow drive could be it. So the ultimate goal is
personal to us...to find our niece's hero. But it goes past Sydney.
And maybe that's why the Lord chose for Jeremy not to be her match.
Because now, through all of these drives...many many names are being
added that can potentially save many other lives besides Sydney's.
So how can you help?
Join the registry to be a bone marrow donor:
If you're local, mark your calendar for one of the following bone marrow drives:
Newton:
Saturday, November 16
9:00 AM – 6:00 PM
Koerner Heights Church
320 N Meridian Street, Newton, KS
Wichita:
Tuesday, November 19
10:00 AM – 7:00 PM
Asbury Church
2801 W 15th Street, Wichita, KS
What do I have to do to get on the registry?
It's pretty straightforward and easy. In order to join the registry
all you need to do come to one of the local drives and fill out an
information/consent form and swab the inside of your cheeks to collect
cells for tissue typing - it shouldn't take more than 10 minutes. Donors
must be between the ages of 18 and 55, must meet the medical eligibility
guidelines and be willing donate to any patient in need. As a DKMS
donor, your tissue type, along with your ID# is stored anonymously on
the Be The Match Registry® (operated by the NMDP). The registry is
searched by doctors trying to find matches for their patients. If a
doctor selects you as a match for a patient, you may be asked to donate
stem cells collected from your circulating blood (called PBSC donation)
or to donate bone marrow collected from your pelvic bone (not the
spine). All ethnicities are needed.
Help us spread the word:
Tell
your friends, coworkers, family, church, everyone! about Sydney, and
the hunt for her donor match. Help us make people aware of the bone
marrow registry and get people to the drives!
I know you may have so many questions, so hopefully this information helps:
What is a bone marrow transplant?
A bone marrow transplant is a lifesaving treatment for people with
leukemia, lymphoma and many other diseases. First, patients undergo
chemotherapy and sometimes radiation to destroy their diseased marrow.
Then a donor's healthy blood-forming stem cells are transfused directly
into the patient's bloodstream, where they can begin to function and
multiply. For a patient's body to accept these healthy cells, the
patient needs a donor who is a close match. Seventy percent of patients
cannot find a matching donor within their family and depend on the
national registry to find an unrelated bone marrow donor.
What makes a person eligible to donate?
Donors needs to be between the ages of 18-55, weigh more than 110 lbs
and be in good health. There is a top weight requirement, too..for
example at 5'4" you must be under 233 lbs.
You are NOT eligible if you have:
HIV
Hepatitis B or C
Kidney or liver disease
Chronic or severe neck or back problems
Epileptic or other seizure within past year
Diabetes that requires medication
Sleep apnea, breathing problems or severe asthma (daily inhalers are acceptable)
Autoimmune disorders such as lupus, rheumatoid arthritis, multiple sclerosis or fibromyalgia
Or a history of:
heart disease/surgery
strokes, including TIA
blood clotting or bleeding disorders
cancer, with the exclusion of melanoma, breast, bladder, cervical
(stage O, in situ) and cured localized skin cancers such as basal cell
or squamous cell
What is the donation process like?
There
are two ways to donate. The majority of donations do not involve
surgery. You may either be asked to donate stem peripheral blood stem
cells or bone marrow. For the bone marrow dontation, liquid
marrow is collected from the backside of the pelvic bone (not the
spine) using a special syringe. Donors receive general anesthesia so no
pain is experienced during the marrow extraction. This is a 1-2 hour,
outpatient, surgical procedure. Many donors experience some pain,
bruising and stiffness for up to two weeks after their donation. Within a
week of donating, most donors are able to return to work, school and
many regular activities. Though no medical procedure is without risk,
there are rarely any long-term effects from donating. Only five percent
or less of a donor’s marrow is needed for transplantation and will
completely replenish within a few weeks, so you can save a life without
giving up anything permanently.
The method used for donation
depends upon the patient’s needs and is determined by the patient’s
doctor. Registered donors must be willing to donate using either method.
Here's a testimony from a donor just this past week in Michigan...
What is my commitment if I join?
When you register as a bone marrow donor with DKMS, you make a commitment to:
- Be listed on the Be The Match Registry® until your 61st birthday, unless you ask to be removed
- Donate to any searching patient who matches you
- Keep us updated if your address changes, you have significant health changes or you change your mind about being a donor
- Respond quickly if you are contacted as a potential match for a patient.
- You
have the right to change your mind about being a donor at any time.
Should this happen, you must notify us immediately so we can remove your
information from the registry. It is devastating to patients and their
families should you wait to back out after you are a match.
Is there a cost to register as a bone marrow donor or to donate?
There
is no cost to the donor to register or donate. Costs will be covered by the
patient’s insurance, or by the National Marrow Donor Program which
operates the Be The Match Registry® or by DKMS. This includes costs for
travel, meals, lodging or other necessary expenses. A donor’s insurance
will never be used.
I am not eligible to be a bone marrow donor...what can I do?
Everyone can make a donation to Delete Blood Cancer. This non-profit
organization is making our drive possible. Their goal is to fight blood
cancer by building the national
registry. They don't require donors to contribute, but each swab costs
$65 for Delete Blood Cancer to process. 100% of your donation is
directed towards those costs. You can make your tax-deductible donation
by clicking on the link below. http://www.firstgiving.com/fundraiser/teamsydney1/teamsydneyfundraisingpage
If you aren't local and can't make it to one of our drives, there is more you can do...
1.
Host your own drive or "swab party" (Reference Sydney Balzer) This
could be as simple as having an evening that you invite your friends and
family over to your house, or have swabs in the workroom at your
workplace. Just go to www.deletebloodcancer.org and click on Organize a
Drive/Host a Swab Party and you'll fill out the email!
2. Go on the DKMS website (
www.deletebloodcancer.org) and have a kit sent to your house and swb yourself!
3. Donate (Team Sydney Fundraising Page -
http://www.firstgiving.com/fundraiser/teamsydney1/teamsydneyfundraisingpage)
Check out
the news story that Sydney's local news station did on her.
And if you want to continue following Sydney's journey closely...here are the 2 best ways...
Sydney’s Page on CaringBridge.org
Team Sydney Facebook Page which
is maintained by a community of families who are devoted to helping
Sydney Balzer conquer cancer. Here you’ll find plenty of more
information about Sydney, becoming a bone marrow donor, and plenty of
love and support.
And
now we wait. We wait to see the outcomes of these drives. We wait and
see if Sydney's hero is found. And we rest in knowing that God knows
all the outcomes already. There is nothing else worth putting our hope
in...not people, not statistics, not medicine...just Him.
“And now, O Lord, for what do I wait?
My hope is in you."
Psalm 39:7
*all information gathered from www.deletebloodcancer.org
