another update on Sydney

How about an update on our niece, Sydney?  I know some of you have been following and praying and I haven't done a very good job of updating.

She's home!!!  The last I told you the transplant was done, and she moved out of ICU back to her normal room.  They waited and waited for the cells to reproduce and they did!!!  

And after 40 days in the hospital she made it home! She'll be in isolation at home for 100 days, since her body has no ability to fight off infections until her immune system strengthens.   Please keep praying for her complete recovery. 

And now check this out...

 This is a billboard along on the side of the most traveled highway in Michigan!

I cannot even fathom being 9 years old, fighting cancer for the 2nd time and then seeing your face on a huge billboard.  We hear she was super excited! And we're so thankful the story God has written for her is inspiring others and making a difference.

You can still follow along as her parents update her Caringbridge page .

And how about a huge PRAISE!!  After all of the bone marrow drives that went on to help find Sydney a donor match back in October and November, we got word that one of the college students from Tabor (where are sweet friends held a drive in honor of Sydney) was called to be a match for someone!!!  Such awesome news! I trust completely that God is using Sydney's life and story to do a good work and fulfill his purposes.

an update on Sydney

I know I haven't kept you all updated about our niece here on my blog.  Sometimes there is just TOO much social media, that you don't know which ones to update and it's just too hard sometimes to get to them all.  So most of my updates to the masses have been on Facebook.  But in case we're not connected on Facebook, I still want to update you on our niece, because I know there are many of you out there who have been praying.  And I thank you for that.  Thank you for your encouraging emails and your prayers. 

I guess I left off here on the blog with the search for a donor that would give Sydney the best chance as a cancer-free life, with a bone marrow transplant. 

A donor was found.  2 actually.  That is unheard of people.  God's in control.

And they were both perfect matches.

One donor was chosen and she agreed.  All we know about her is that she is a 25 year old female somewhere in Europe.  Her "YES" meant our sweet niece has a second chance at life.  It means she may actually be able to beat this cancer!  We are so grateful for this stranger, and I thank ALL of you who got on the bone marrow registry so that you could possibly be a match for someone else just like Sydney.  I hope and pray if you, if I, am ever called to be the hero for a stranger...that the answer will be "YES". 

So Sydney's last big round of chemo was in December (except for the chemo she got as part of the pre-transplant plan).  We hope and pray this is the last chemo she will ever have to have put in her body.  She's had so much.

She celebrated Christmas at home with her family.  The rest of Dave's family got to be there too.  But we were stuck at home with sickness, which was so hard!

She entered the hospital about 10 days ago to begin the prep for the transplant.  She decorated her hospital room, named it "Sydney's Oasis" and struggled through a few hard days of chemo.

The donor went through the extraction procedure in Europe this week, on Tuesday, while Sydney had a day of rest.  The stem cells were flown to the Detroit Childen's hospital in the hands of a person.  It even got it's own airplane seat right next to the courier (as told by Sydney's mom), and didn't even have to go through the x-ray part of security!  Sydney's chance at life arrived in a pink cooler on Wednesday morning.

The transplant took place yesterday, and took about an hour and a half to finish.  The process is just like a blood transfusion, Sydney was awake and the stem cells go from the bag into the tube and into her port.  She was watched very closely for allergic reactions, as hundreds, if not thousands prayed for no allergic reactions.  And there were none.  The transplant was a success, and Sydney moved out of ICU back to her "oasis" this morning.

The next days and weeks are crucial.  She's having major stomach pains and some mouth sores have started.  Please continue to pray that she'll be comfortable, that she'll stay safe from infection since she has no immune system to fight anything, and that ultimately the stem cells will do their job in her body.

It's been a long journey, and it's not over yet.  Sydney has spent nearly a third of her 9 years of life battling this ugly cancer monster. That just breaks my heart into a million different pieces. It's my plea to the Lord that she get to be a kid again doing what normal kids do...and not living a life of needles, ports, chemo and fear.

I will try to update as we hear more about how she's doing post-transplant.  But you can also follow her CaringBridge journal.  They have been posting daily for the time being.

I prayed this verse all day long yesterday during her transplant and I'm going to stick with it for awhile. 

 "The Lord your God is in your midst, he is mighty to save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing."

(Zephaniah 3:17) 

To me, it's the perfect picture of a Father, standing over a hospital bed, providing every last need for his little girl.  A Father who has already conquered death, so what is left for us to worry about.  A Father who created the universe with just a few words.  And a Father who cares enough about her in a very deep, intimate and personal way, that he's willing to stand over that bed and focus on her, as if she's the only person in the universe.  A Father who is perfect, with a love that is perfect, who has good and perfect plan for his precious girl.

 

SATURDAY IS COMING!!!!

Quite simply I have been blown away at the support that friends and strangers alike are showing us to get the word out about the bone marrow drives in Newton and Wichita.  I have been left speechless and tears in my eyes many times in the last two weeks.

Saturday is the big day here in Newton.  Are you coming???  Have you told your friends??

 

Here's what you can expect when you show up at either drive.  There is no need to do anything in advance, and we promise there will be no drilling for bone marrow!!!

 

In addition to these 2 community wide drives, we have had people step up and take the lead for bone marrow drives and swab parties all over the place.  

Here was a post of mine from Facebook a few days ago...

I am SPEECHLESS!!! A friend of a friend answered the call when asked who had connections at colleges...she is RUNNING with this and doesn't even know us!! And several other friends of ours at K-State and in Manhattan have stepped up and wanted to help too! If you know ANYONE at K-State share this!!! There is a drive NEXT THURSDAY, NOV. 21st going on there for ANYONE and EVERYONE to get swabbed!!! Tell everyone you know who is there!! Thank you Morganne Wiltse (and our other friends helping there), Kansas State University, and the Greek community, from the bottom of our hearts from the entire Balzer Family, for rallying behind us as fellow Wildcats and proving that K-State really is ONE BIG FAMILY!!!

Check out this flier they had made...

In addition we have friends doing a drive at Tabor, possibly being opened up to the entire Hillsboro community....and Hesston College.....and more!!

We are so grateful!  And humbled.  So many friends who aren't organizing drives themselves are posting fliers, sharing anything and everything they can on FB, writing blog posts, calling banks and schools, and organizations and news stations...pretty much doing everything they can to help us educate the masses and get people added to the national bone marrow registry, in hopes that ONE of them (and hopefully a backup too) is Sydney's match!

 Words don't really express our gratitude.  And I know that Sydney's parents feel the same way. 

Today this picture was posted on the Team Sydney Facebook page.  It brought tears to my eyes.  That is Sydney's best friend, Ruthie.  She and her family were on Sydney's Celebration Cruise this past summer.  We watched them dance and twirl and laugh at the private party we had...you could see the sparkle in their eyes...they had many many years of fun ahead of them after that first victory over Leukemia. 

And here she is....just a few months after that celebration cruise.  Sitting at the bedside of her best friend.  Laughing and just being normal 9 year old girls.  9 year old girls who have had to live the reality of cancer.

The last thing I'll leave you with today is a beautiful write-up of Sydney's journey through Leukemia.

Click here.

A reminder of all that God has brought our sweet niece through.   

 Isaiah 43:2 says,

When you pass through the waters, I will be with you;
    and through the rivers, they shall not overwhelm you;
when you walk through fire you shall not be burned,
    and the flame shall not consume you.

  

I used this to pray many many many times through her first fight, and we continue to pray it now...

pleading with the Lord to allow Sydney to walk through this fire without a burn mark on her body and not even a trace of smoke in her hair.

 

the search for Sydney's hero

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