Be their HOPE, Be their HERO

Today a call came in to a local radio station about the need for bone marrow donor for a local child who was diagnosed with leukemia and now needs a bone marrow transplant.  The local IBEW was hosting a swabbing event.  You simply go in fill out a form and get your cheek swabbed.  If you are a match, you will have to go to a specified hospital for the donation process.  Here is part of the process from cancer.gov.
 

• How are the donor’s stem cells matched to the patient’s stem cells in allogeneic or syngeneic transplantation?

  To minimize potential side effects, doctors most often use transplanted stem cells that match the patient’s own stem cells as closely as possible. People have different sets of proteins, called human leukocyte-associated (HLA) antigens, on the surface of their cells. The set of proteins, called the HLA type, is identified by a special blood test.
  In most cases, the success of allogeneic transplantation depends in part on how well the HLA antigens of the donor’s stem cells match those of the recipient’s stem cells. The higher the number of matching HLA antigens, the greater the chance that the patient’s body will accept the donor’s stem cells. In general, patients are less likely to develop a complication known as graft-versus-host disease (GVHD) if the stem cells of the donor and patient are closely matched. GVHD is further described in Question 14.
  Close relatives, especially brothers and sisters, are more likely than unrelated people to be HLA-matched. However, only 25 to 35 percent of patients have an HLA-matched sibling. The chances of obtaining HLA-matched stem cells from an unrelated donor are slightly better, approximately 50 percent. Among unrelated donors, HLA-matching is greatly improved when the donor and recipient have the same ethnic and racial background. Although the number of donors is increasing overall, individuals from certain ethnic and racial groups still have a lower chance of finding a matching donor. Large volunteer donor registries can assist in finding an appropriate unrelated donor (see Question 19).
  Because identical twins have the same genes, they have the same set of HLA antigens. As a result, the patient’s body will accept a transplant from an identical twin. However, identical twins represent a small number of all births, so syngeneic transplantation is rare.
  
  

• How is bone marrow obtained for transplantation?

  The stem cells used in BMT come from the liquid center of the bone, called the marrow. In general, the procedure for obtaining bone marrow, which is called “harvesting,” is similar for all three types of BMTs (autologous, syngeneic, and allogeneic). The donor is given either general anesthesia, which puts the person to sleep during the procedure, or regional anesthesia, which causes loss of feeling below the waist. Needles are inserted through the skin over the pelvic (hip) bone or, in rare cases, the sternum (breastbone), and into the bone marrow to draw the marrow out of the bone. Harvesting the marrow takes about an hour.
  The harvested bone marrow is then processed to remove blood and bone fragments. Harvested bone marrow can be combined with a preservative and frozen to keep the stem cells alive until they are needed. This technique is known as cryopreservation. Stem cells can be cryopreserved for many years.

Here is the kicker in this situation.  They already had a match, but the lady decided she no longer wanted to do it!!  A child's life is on the line, and she no longer wants to do it?  I have to respect her decision, but to her I ask, "What if it were your child?"  My heart breaks for this family, as time is of the essence!  To the family, I say stay strong and hold onto hope!  I already have my kit from BeTheMatch.org and have submitted my swabs.  This is a quick and simple way you can register to be a bone marrow donor.  The online application only takes a few minutes.  They say your swab kit will arrive within 2 weeks, but mine came within a few days.  It may take a few months before you are matched or a several years.  All I ask is that you do not make this decision lightly and if you choose to become a donor, PLEASE, stand by your decision.  There is nothing worse than having your hopes dashed.  Instead, be their HOPE!  Be their HERO!!

If you do not feel you want to donate bone marrow, then consider giving blood.  I always though of blood being donated for surgeries and accidents.  Never for cancer!  Not until my son was the lucky recipient of someone's generously donated blood.  In the first 2 weeks of his diagnosis, he received a blood, platelet, and plasma transfusions.  These saved his life!
  

 

The above is the MINIMUM a child diagnosed Pre B Cell Acute Lymphoblastic Leukemia, a blood cancer, goes through.  There are several different types of leukemia, but if you or someone were to be diagnosed with leukemia, this is the one you would want.  Its a "best case" scenario.

Friendship

Yesterday was National Women's Friendship Day and it made me think of those women in my life who have helped shape me into who I am, laughed at me and with me, sometimes until our sides hurt, have wiped more than a few tears, and just been there when I needed a friend.  I have many girlfriends who all have a special place in my heart and always will.  Time and distance have changed some of my friendships through the years, mostly because I really stunk at staying in touch via letters. Thank goodness for Facebook!!  I have had the chance to reconnect and stay in touch with friends that have an extra special place in my heart.  I want to share with you some of those special people.

My first best friend, Melanie.  She befriended me when my family moved to the small town of McBain, MI near Cadillac. She lived just up the road from me. Her family became my family. Probably because I was always there and always going to church with them.  We would play "Mickey" over and over and over and dance around her room. We would laugh and do things little girls do. And as we got older a few things we shouldn't have, too.  As time went on, some STUPID elementary school thing happened, I don't even remember what, and we grew apart. The friendship grew again in high school but never quite what it was. But her and her family, especially her mom, hold a special place in my heart.


Then there is Becky.  My Beck-Fly.  I don't remember how the friendship started, it just was. All through school.  I spent many nights at her house laughing and talking about things girls talk about.  Sometimes we drifted apart but we came back together like nothing ever changed.  We got ready for high school dances together. She was with me when I put my stepdads Blazer in a snow bank.  Cheered and ran track together.  I even stood up in her wedding.  Then, life seemed to get in the way.  That and I lived in Illinois and remember how I said I stunk at writing and keeping in touch.  I blame myself for the distance that came between us, but we have come back together and stay in touch more. I know if I need her, all I need to do is ask.

Sara, I believe became my friend through Becky. I don't quite remember.  But we spent a lot of time together in high school and even dated friends on two different occasions.  She saw more tears than I care to remember.  We went dancing together and she was the first to ever see me drunk and knows many of my secrets.  And more times than I care to remember.  We camped and travelled the back roads and went to concerts.  She saw me through my biggest broken heart, when I thought my world was ending.  Obviously, it didn't end. We travelled to see each other, with her in Michigan and me in Illinois.  I must admit she made most of the trips.  Then there was a DUMB falling out.  We have since reconnected and I hope to go visit her in Wisconsin sometime in the semi-near future. 

Ah, and Theresa!  Another house I spent many nights at! And her mom made my prom dress, too.  I helped her with her horse chores and we road them, too!  This is where my true love of horses comes from.  Even though, during one of those rides, I ended up on the side of the road, with the saddle on My Guys belly.  That still makes me laugh. Theresa, was there for me during some really hard times.  There with a ready ear, her shoulder and a hug, and something to eventually make me laugh.  For as long as I could remember we passed notes in the halls, and hers were always folded in some new design.  She was that friend I could be quiet with and be happy.  Again, time and distance got in the way.  But I will always love you, Theresa!

Oh, Jennifer! Jenny, Jenny, Jenny!  A friendship that started in 7th grade, or there about and is still strong.  Her family is my family.  We camped on her grandparents property, tubed down the Clam River, went on church trips and so much more. I have laughed more with this woman than anyone else.  I attended both of her brothers weddings.  We went away, to Elgin, IL, to go to college together.  We have been through many of life's ups and downs together.  Stood up in each others weddings. Have daughters a month apart.  She was there when my brother passed.  And again a year later when my stepdad passed.  And she was there the day my son had his port surgery.  I walked into his hospital room, and surprise, she was just there.  Because she is always there.  And I love that God gave me her as my friend!  I look forward to another 60 years of friendship!

Little Dawn.  We met in Illinois, through friends, when we went to a Joe Diffy concert.  Our common ground, of being from Michigan, helped that friendship grow.  She picked me up after my second biggest heartbreak.  We found mischief and laughter together.  Dried each others tears.  And even though she moved back to Michigan before me, she was here waiting, and just as excited as my family, when I moved back.  And we picked up right where we left off.  We always do, no matter how much time has passed.  And I know that if ever I needed anything, all I need to do is ask.  If she can't, she will find someone who can.  Now, I am waiting for our coffee date!!

Aimee.  We are bonded in the soul.  We met via a relationship I was in that she ended up helping me get through.  She was also my dance partner every Saturday.  We weren't friends right off, but what we have now, even through the miles will NEVER be torn apart.  I know she is there for me and I for her.  Many times I have called and she listened and calmed my fears and heart.  Again, we stood up in each others weddings.  I am really needing an Aimee fix!  Words cannot explain the friendship we have. It just is. And always will be.

Along came, Kerri. Scuba-Kerri.  My twin.  We were often asked if we were twins when we were together.  Often we would laugh and say, "Yes, we are".  I hated Kerri the first time I met her.  She was my boyfriends ex.  She was beautiful and I thought, "How do I compete with that?".  Thankfully, Kerri, reached out to me and we met for drinks at a local bowling alley.  And I knew then, that our friendship was meant to be. I just had to quit being stupid and insecure.  We built a friendship through similarities, hardships, and lots of laughter.  And even though she is Illinois and I in Michigan, that friendship, which is true, will always last through the test of time.

 

These are the ladies that have been apart of my life for over 12 years.  Each has played a role in who I am.  It is hard to put into words, the true depth of these friendships.  Sometimes, they just become a part of your soul.  And to lose them would be like loosing a part of who you are.

I have other friends, some just as old and some newer.  They have all touched my life in someway.  Been there when I needed a friend or to laugh.  In recent years, there has been Tracy, my first new friend after I moved back to Michigan.  Barb, my unexpected former neighbor, who tried to kill me with her eyes the first time I met her.  Gratefully, our friendship blossomed into so much more.  Brandy, my sister-in-law.  Auntie to my children. Friend to my heart!  Erin, my first friend when I moved to Gobles, MI, who has been there for me and my kids, especially during this last year when crap hit the fan!!  Jamie, whom I met through Erin and our kids.  Another soul sister.  God just meant it to be. 

I am grateful to all those women in my life for our similarities that allow us to connect and our differences that allow me to grow. For the support given, even virtually, over the past few years when the crap storm rained on my parade and flooded my life.  That strength you all praise me for having doesn't always come from with in.  It comes from God, my family, and my friends who stand with me and let me know I am not alone. I thank you for the laughter, the tears, the hugs, the tissues, the mischief, and above all the love you have shown me. 

PS- I could have written so much more about each of these phenomenal ladies but that would require me to write a novel and not just a blog.

CureSearch Goes MOM on Cancer

 

This month CureSearch goes MOM on cancer!! And so can you!

Moms are relentless, fighting hard, and sacrificing anything to help their children. We're making mom's energy into a verb. Because whether you're a mom, a dad, a grandparent, sibling, doctor, or anyone who loves, or has loved, a child with cancer, you know that MOM energy describes what is required in the pursuit of cures.

Who are CureSearch?

For more than 25 years, CureSearch has been a leader in funding children's cancer research. During this time, overall cure rates have increased from approximately 40% to 80%. But, for many of the more rare cancers, cure rates remain unchanged. During this same time, only 2 drugs have been specifically developed for children's cancer, a number that is simply not acceptable. Today, as they did decades ago, children are treated using medications developed for adults, but in much higher doses. With decades to live after treatment, children often experience significant side effects and secondary cancers later in life.

Now, the field is changing. Advances in genomics are enabling researchers to understand more and more about the various types of children's cancer – from how they begin at the cellular level to what impact specific therapeutic agents have. Such understanding is expected to lead quickly to new, targeted treatments, if funding is available.

To help us define and launch a new scientific vision, CureSearch convened a Scientific Advisory Council featuring some of the brightest and most innovative thinkers in the cancer research field. Together, this venerable group has set a strong vision for how CureSearch might stand at the intersection of medical, scientific, and commercial sectors to bring patients to the forefront as we solve for a cure. In partnership, we have articulated the following scientific vision:

CureSearch will accelerate the cure for children's cancer by driving innovation, eliminating research barriers, and solving the field's most intractable problems.

CureSearch will continue to fund collaborative clinical trials so that children in treatment today have access to the latest medicines at hospitals close to home.

Ultimately, CureSearch hopes to change the odds for those children who are most at risk.

 

How did I became familiar with CureSearch?

Cure search is currently funding the clinical trial for my sons cancer treatment protocol. In a previous post I spoke of my son, Rocco's, diagnosis of leukemia. What I didn't talk about, was that we opted to be part of a clinical trial.  When all the tests were in 30 days after diagnosis, we met with his doctor to go over his treatment and options. It was determined that Rocco was low-risk ALL. Woo-hoo!! It felt weird to celebrate that diagnosis, but trust me it was worth celebrating.  Rocco was the first low risk patient they have had in several years so it was happy moment for the staff as well! Rocco, my husband and I sat down with Dr. Elliott and Nurse Sue to go over the options. First, Dr. Elliott when over the standard treatment. Up to this point, I had processed the diagnosis, surgery for his port, transfusions, and all other appointments very well. After the explanation of the standard protocol, my head was reeling and my brain wanted to shut down.  Then, she went over the low-risk protocol for the new clinical trial. The difference was like being handed a book and a pamphlet.  There were so many medications involved in the standard protocol that I could not wrap my brain around it. Then the clinical trial seemed like it would be so much easier on him that it was a no brainer to decided what we wanted.  We wanted to part of the clinical trial. But wait..... once we made that decision we had to be randomized. Rocco was put into the system and that would decide if he would get the low-risk protocol or the standard protocol.  Thank, God (He heard my prayers)! We got the new low-risk protocol.  It took me 3 days to get that standard protocol out of my head.  That is how overwhelming it was for me.  Because of CureSearch and this clinical trial, Rocco is having a much easier time than I believe he would have otherwise.  That is just my opinion as a mom.

 

My goal in the future is to give back to those who have given to us through this difficult time.  Here are ways you can help CureSearch:

Donate 

Fundraising Events 

Go MOM on Cancer 

Legacy Fund 

Corporate Giving 

Volunteer 

Advocate 

Patient / Family Data Form 

Please feel free to share your story in the comments section so others can see our Warriors and how brave and awesome they are!  And, please, share my blog and spread the awareness.

 

Photos courtesy of: CureSearch.org and facebook.com
Information courtesy of: CureSearch.org

Childhood Cancer Awareness Month

Did you know that September is Childhood Cancer Awareness month? Last September, I saw the posts and pictures on Facebook and even made one of those pictures my profile picture for a few weeks. Little did I know, on September 28, 2012, my 4 year old son would be diagnosed with Acute Lymphoblastic Leukemia (ALL). 


Here is our story: When I picked up Rocco on Monday from preschool, his teacher asked if he was feeling okay. She said he didn't seem himself. I figured it was fall allergies. When I got him into the van, I felt his head and he felt warm. He fell asleep a few minutes in to our 20 minute drive. I carried my sleepy boy into the house and took his temperature. It was 99.9 degrees, so I wasn't too worried. The fever continued through Tuesday evening. I kept him home on Wednesday, due to the 24 hour fever rule at school. Thursday the fever returned with some serious sweating. By Friday, at 2 in the morning his fever spiked at 103.5° and he complained that his neck and back hurt. I gave him the last of our children's ibuprofen and gave him a luke warm bath. That morning I got my daughter all dressed up for her school pictures and on the bus. I then got myself cleaned up and waited for Rocco to wake up. We were at the urgent care by 10am. When they called us back and took his vitals, his temperature was 105.6°!!! My heart stopped and my eyes filled with tears. They immediately found us some more ibuprofen. In the back of my head, I was thinking he had meningitis because of the soreness in his neck and back. When the doctor came in, I expressed my concerns. His only other symptom the whole week was a runny nose and that was more of a watery runny nose.  She checked him over, and could not find anything wrong with him. She left to print a prescription for antibiotics. When she returned, she said something isn't sitting right with her. She wanted to do blood work. So, I took Rocco down the hall to the lab to have blood drawn, then back to the exam room to wait for the results. About 40 minutes later, the doctor walked into the room with the lab results. She informed me that his hemoglobin and white blood cell counts were really low. She had already called ahead to Bronson Children's Hospital where we were to report to the ER to be admitted. Some how, I knew right then what we were facing. I started making calls. First to my husband, then to my friend, Erin, who without hesitation said she would get my daughter after school. Once I arrived at the ER things seemed to move quickly. Another blood test to confirm the results they were faxed. I sat waiting for my husband, when the ER doctor came back in.  He was young and I know this was the first time he ever had to tell a parent their child had cancer because he just blurted, "We are looking at some kind of blood cancer".  Poor guy! I think he expected me to become hysterical. Nope. I had to learn how to breathe again first, then figure out how to tell my husband when he arrived. In a very timely manor, my son was moved to the 3rd floor to the children's hospital. By 5pm, Dr. Elliott (Love her!!) from the Children's Hematology Oncology Clinic was meeting with us to tell us Rocco had leukemia, but needed more tests to confirm what type and his risk factor.  She also informed us what the next week would entail.  Now we had to tell our family.  Not an easy task.

Rocco, an hour after his port surgery

For more of Rocco's story visit: http://www.caringbridge.org/visit/roccobarkoff

Rocco's final diagnosis was ALL(acute lymphoblastic leukemia) low risk. Basically, if you're going to be diagnosed with leukemia, this was the best case scenario! He will complete his treatment April 1, 2015!! Through it all his has kept a good attitude and managed to capture a few hearts up on the 3rd floor!

This is just our story! We have met others who have had a much harder time than Rocco and a few who received their Warrior Wings.

There are so many ways that you can help our Warriors in this war on childhood cancer. Throughout the month, I will be sharing with you organizations that have made or are making a difference in our lives as we face this dreadful disease and how you can make a difference by supporting them. Here are some facts for you to ponder, keeping in mind that that it is impossible to measure the impact this disease has on its victims and their families.





• Cancer is the leading cause of death by disease in children and adolescents in the United States. (Source: National Cancer Institute)

• Each year in the United States, approximately 13,500 children and adolescents 18 and under are diagnosed with cancer, that’s more than a classroom of kids a day. (Sources: Center for Disease Control and Children’s Oncology Group)

• One out of every 300 males and one out of every 333 females in America will develop cancer before their 20th birthday. (Source: American Society of Clinical Oncology)

•More than 40,000 children undergo treatment for cancer each year. (Source: CureSearch)

• Approximately 20 percent of all children with cancer will die for their disease, a secondary cancer,  or complications from treatment. (National Cancer Institute)

• The causes of most pediatric cancers remain a mystery and cannot be prevented. (American Cancer Society)

• Childhood cancer does not discriminate, sparing no ethnic group, socio-economic class or geographic region. (Source: Centers for Disease Control data)

• About one in 500 young adults is a childhood cancer survivor. Nearly 2/3  of the survivors later experience significant and chronic medical problems or develop secondary cancers as adults that result from the  treatment of their original cancer. (Source: UCSF Benioff Children’s Hospital)

•  Incidence of invasive pediatric cancers is up 29% in the past 20 years. (Source: National Cancer Institute)

• In 20 years the FDA has initially approved only one drug for any childhood cancer. (Source: Kids V. Cancer)

•The average age of death for a child with cancer is 8, causing a childhood cancer victim to lose 69 years of expected life years; a significant loss of productivity to society. (Source: Kids V. Cancer)

•Childhood cancer survivors are at significant risk for secondary cancers later in life. (Source: National Cancer Institute)

•Cancer treatments can affect a child’s growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed. (Source: National Cancer Institute)

•Radiation to a child’s brain can significantly damage cognitive function, or if radiation is given at a very young age, limiting the ability to read, do basic math, tell time or even talk. (Source: National Cancer Institute)

•Physical and neurocognitive disabilities resulting from treatment may prevent childhood cancer survivors from fully participating in school, social activities and eventually work, which can cause depression and feelings of isolation. (Source: National Cancer Institute)

Pictures Courtesy of: TheTruth365.org, facebook.com
Facts Courtesy of: TheTruth365.org