Monday, September 29, 2014

A September to Remember


We can't believe that this month is coming to an end! With September being National Childhood Cancer Awareness Month, it gives all of us an opportunity to talk about childhood cancer, to explain to people that we need to specifically support and fund childhood cancer research, to share the staggering statistics about the number of children affected and the tiny amount of support given to research by the federal government. 


We are so very thankful to our family and friends who have joined us in our crusade to spread the word and raise money for research! You raised a total of $4,535 in honor of our girls! WOW! In addition to those donation, the school where Christy works had a Hat Day on Friday. The staff and students raised $521.00 for CURE!

Because of you and countless other donors, CURE surpassed their goal of raising $200,000 with their CURE Kids Conquer Cancer campaign. As of tonight, $205,044 has been donated!! 

You can still donate here: http://bit.ly/1AaG7HC

Another very special reason that this month was a September to remember was that Elena was asked to speak at this month's Quiet Heroes event. The event was Saturday. This was the 10th Annual luncheon. It is a very unique and inspiring event honoring mothers of children with cancer. At the same time, the event raises much needed funds for pediatric cancer research. Over the past nine years, this event has raised more than 4 million dollars. 

Usually the keynote speaker is an adult. This year, Elena and four other childhood cancer survivors spoke. They shared their stories and inspired everyone there. We are so very proud of Elena for sharing her story, her strength, and her battle. She clearly and confidently did that in front of 600 people! She was amazing! As of today, including raffle sales, silent auction sales, tickets sales and donations, that event has raised $410,000!!! Incredible!

We had a such a wonderful time and are grateful to CURE for the invitation to enjoy the event as a family! It was fun watching Elena practice her speech in the ballroom, in her pjs, at 11:00 pm the night before. We also had the best time visiting with our friends that night! The girls LOVED staying in a hotel - a rare event for the Tates! Getting dressed up, eating a fancy lunch together, laughing (and crying!) and volunteering at this event together was something we won't forget.  

the girls in our hotel room the morning of the event
dress rehearsal


our friend Sarah and Elena before the event


watching a picture tribute to those children 
who have survived cancer and those who have lost their battle


E with our friend and the best Child Life Specialist EVER, Karen
Elena mentioned her in her speech


the children who spoke and their moms


all of us with Karen after the event



We hope the energy we saw this September will not end at the end of the month. We hope it will continue to grow and be even bigger next September! Together, we are making a difference!


Thank you for making a difference not only in our lives but in the lives of other children you will never meet!!

In Him,
The Tates

"He restores my soul." Psalm 23:1


Sunday, September 14, 2014

Thank You!



There are not words to express our thankfulness and gratitude to the support you have given to us this month as we are trying to shine a light on childhood cancer and raise funds for much needed research.

As of today, you have given CURE $3,810. WOW! 
Because of you we have nearly doubled our goal of $2,000!

Each year, September brings with it many things, Labor Day weekend, college football, and the first day of autumn. And while it is also recognized as Childhood Cancer Awareness Month, childhood cancer is present every day in the lives of so many. There are still 16 days left in this month of September and CURE is still $101,402 away from it's goal of $200,000. 

What can we do to help?
SPREAD THE WORD about childhood cancer not only today but throughout the year.
PRAY for the children featured on CURE's website.
VOLUNTEER with a childhood cancer organization.
ASK your school to have a CAPS FOR CURE day. 
DONATE to help fund research that could save the lives of children!

As we shared in our last post, CURE's funding of a clinical trail saved Elena's life!
What if they hadn't?

In Him,
The Tates

Acts 20:35 - "In all things I have shown you that by working hard in this way we must help the weak and remember the words of the Lord Jesus, how he himself said, ‘It is more blessed to give than to receive."


Thursday, September 11, 2014

It Matters

This is a really long post, but we promise it's worth it!
How God works in our lives, without us even knowing it, is simply amazing!

We first learned about the organization CURE Childhood Cancer within days of Elena's original diagnosis. A black tote bag with CURE's logo, filled with hospital essentials, appeared one night. In it was also a parent guide that we remember reading in the dark. Throughout Elena's treatment, both girls would look forward to the days when they would see someone from CURE either in the hospital or at the clinic. That meant that they would have a friend there to play games with, talk to, and of course they usually had food! Many times these visits were the highlight of their day and ours!

Since then, we have grown close to CURE's amazing staff and value our relationship with them. We have always been aware of CURE's mission to not only provide much needed support to patients and their families, but ultimately find a cure for childhood cancer by focusing on funding research specifically geared toward pediatric cancers. We are so very grateful for their determination and persistence in pursing this goal. 

In our last blog post, we shared how we had a personal connection with two of the doctors who would be receiving funds from CURE to support their research initiatives. Both Dr. Quayed and Dr. Wasilwski-Masker have had great impacts on our lives and we were happy to see that their current studies were being supported by CURE. We thought it was so great to actually know physicians who were a part of CURE's 2014-2015 $2.5 million in research grants!

That was Sunday. 

Then, earlier this week, we received CURE's monthly newsletter in the mail. In it there was an article outlining some of the research projects CURE has funded and in turn what results these research initiatives were producing.

In that article, we read these words:

"Dr. KY Chiang at Aflac is now in year three of his clinical trial using AMD3100 as a chemosensitizing agent in blood and marrow transplants in chemotherapy-resistant acute leukemia patients. The one patient enrolled in the study (which hoped to enroll more, but no other patients met the criteria) received the treatment and is now more than 600 days post treatment, with no signs of leukemia or GvHD."

Do you know who that ONE patient is? 

If you said Elena. You are right. 
Image the flood of tears and the overwhelming sense of awe we felt as we read those words and connected the dots. The tears wouldn't stop and praises to God flowed from our lips.

Do you remember that after Elena relapsed, her body did not respond to the chemo?

June 11, 2012 
We don't know if today's news can be described as another wave or a changing current...Dr. Lew called with Elena's test results. 
They show her minimal residual disease (MRD) is .2%

What does this mean?
Elena still has a small (but real) amount of residual leukemia. 
All planned transplant appointments have been postponed - AGAIN!

Ideally, her doctors would love her MRD to be undetectable entering a bone marrow transplant.  Survival rates are much higher if this is the case. However, her doctors are also unsure if another intensive round of chemo would get Elena to zero MRD.

Elena's doctors are looking at possible options.
Right now, they are recommending more chemo to keep the leukemia in check and to hopefully reduce the MRD further or God willing - make it undetectable!
  
The big question the doctors have is what intensity chemo they should give Elena.

So, here we are once again with little direction, no plan, and no scheduled appointments.

Do you remember the options for Elena narrowing?
Do you remember hope fading?

June 14, 2012
Yesterday, a plan for Elena's next steps also came into focus.
Her doctor will be giving her another dose of the 36 hour Methotrexate in combination with one or two other drugs in hopes of reducing the leukemia even more.  She will be admitted into the hospital (Scottish Rite) on Tuesday, June 19th. He estimates her stay to be about the same as last time, five days. Back on Memorial Day weekend - she stayed from Thursday til Monday.

We will then wait until the first week in July to have another bone marrow test. Once again, depending on the results of that test, we will have more decisions to make.  Elena's doctor has shared some possible options with us, but if Elena still has any detectable leukemia cells in her body, the options have risks and the decision will not be easy to make.  

We hate that there is not a clear plan for Elena.
We hate that long term outcome seem less and less bright.

We do know that we want Elena to be completely healed from cancer.


Do you remember the day one option became a reality?

July 5, 2012
Just last week, Egleston received approval for a new local research study. This study is for children who are MRD positive heading into transplant. Elena would be the first child on this study, but not the first child to receive the new drug used in the study.  This drug is not a cancer killing drug. It is a "mobilizing agent" designed to move the cancer that is resistant and "stuck". We know that Elena's is. The drug will move the cancer out of the nooks and crannies of the bone marrow so that it can be killed by the high dose chemo and radiation that Elena will receive in the days immediately before her transplant.  This is currently the best option we have.  We are thankful this study opened and we are thankful that we can remain in Atlanta for Elena's treatment!

When it stated in the article the name of the drug, that Dr. Chiang was the doctor, and that the patient was over 600 days out from transplant we knew that this had to be Elena.

WOW! Imagine...an organization that we had already grown to love was unknowingly paired up with a doctor whom we had yet to meet to ultimately save our daughter's life! UNBELIEVABLE!

It is absolutely AMAZING that our daughter's life has been impacted so greatly, and ultimately saved, because a brilliant doctor had an idea and was given a chance to explore this idea because of funding provided by CURE! WOW!

There are not words to describe our gratitude. Because CURE said yes to Dr. Chiang, Elena is alive today. How can you say thank you for that?

If you are wondering if your donation to CURE matters...it does. 
Because people like you donated to CURE, they were able to fund Dr. Chiang's clinical trial. THE clinical trial that Elena was the ONLY patient to participate in.
Believe us, your donation matters!

If you have not already done so, please give to CURE today.

This link will take you to the girls' page:
http://bit.ly/1AaG7HC

Thank you!

In Him,
The Tates

"Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be the glory!" 
Ephesians 3:20

Sunday, September 7, 2014

Believe

We have been overwhelmed by the response to our kickoff to Childhood Cancer Awareness month. As of this evening, $1,500 has been donated to CURE in honor of our girls! THANK YOU! 100% of that money will go toward CURE's research initiatives. Of the 11 local 2014-2015 research initiatives, we personally know two of the doctors.  



Dr. Quayed was Elena's primary BMT doctor. She is smart and funny. She listened and answered question after question. She gave us hope. She was awarded $99,087 for a Phase 1 study of mesenchymal stromal cells for the treatment of acute and chronic graft-versus-host disease. Elena experienced acute graft-versus-host disease following her transplant.



Dr. Wasilwski-Masker is one of the cancer surviorship doctors. She was also one of our favorite on-call doctors when Elena was inpatient at Scottish Rite. She and another doctor were awarded $49, 665 for assessing physical activity and quality of life among pediatric cancer survivors. Their research will directly impact Elena.

We know that in the years since our girls were diagnosed, there has been little improvement. One of the factors for this is the severe lack of awareness of childhood cancer. THANK YOU for helping us increase awareness! 

How does childhood cancer become a priority cause in this country? The journey begins with each of us. We continue to need your help to raise more funds and more awareness. We hope you will continue to help. Please share our story with your friends and family this month and ask them to join you in making a difference.

Together, we can make curing childhood cancer as urgently important as it should be!

Below is a commercial that was filmed last August as a part of CURE's 2013 campaign. It is being shown locally on TV and websites again this year. The girls were a part of it. There are a total of four commercials.  We will be sharing all of them with you this month. 





Thank you for sticking with us and loving us so much that you tell others about childhood cancer!

In Him,The Tates 

"I have not stopped giving thanks for you, remembering you in my prayers." Ephesians 1:16

Monday, September 1, 2014

Let's Conquer Cancer!

It's so hard to believe that today is the first day of September!

After four weeks of school, we are happy to say that there have been more good days than bad at the Tate House. A huge answered prayer! We have somewhat settled into the routine of balancing school, homework, and work. The weeks are still jam packed with lots of tests, homework, and projects, but we try to make time to breathe and enjoy being together. Last week, Liv sang the National Anthem with her school chorus at the Gwinnett Braves game, Elena had her first Beta Club meeting for this school year, and the girls are really into riding their bikes.




Those of you who have followed the blog, also know that September means more than back to school and the end of summer...


September is Childhood Cancer Awareness Month

For the sixth year in a row, we have been asked by CURE to share our story. It is our honor to join such an amazing organization in raising money to fund research that will lead to better treatments and cures for pediatric cancers.  Since our girls' diagnosis' , there has been little improvement. One of the factors for this is the severe lack of awareness of childhood cancer and the severe lack of funding.

Because you know us, you already know the statistics.

In the next 12 months, 12,700 children will be diagnosed with cancer.
80% will survive - 20% will die
Cancer is the #1 cause of death by disease of children.

Today, 46 families will be told, "Your child has cancer."
Today, 7 children will breathe their last breath.

Of the ones who survive, 3 out of 5 will suffer from long-term side effects from cancer. This is Elena and Liv's reality. The very procedures that saved their lives, Liv's brain surgery and Elena's chemo and radiation, hurt them.

Just last month, we met with all of the girls' teachers to share their stories and explain their realities and the cognitive late term effects they face daily. We have to do this each year. Here's the list of problems that we shared with their teachers:
o   
o   understanding math concepts, remembering math facts, sequencing
o   auditory or visual language processing (trouble with vocabulary, blending sounds, and   syntax)
o   problems with reading and reading comprehension
o   short-term memory (trouble following multi-part instructions)
o   information retrieval
o   spelling
o   taking notes
o   p
lanning and organizational skills
We also recently posted about Elena's test results from her first survivor clinic appointment. Her late term effects impact her body in several other ways as well.

Watching our girls' struggle is our reality - that is our life.
It is hard.
It hurts.
It is overwhelming.
It also fuels us to fight.
We fight for the girls to receive the best education possible.
We fight to learn more about their problems.
We fight to help fund research that will lead to better treatments and cures for pediatric cancers.

We want to help raise awareness. We want people to really understand what is involved in the fight against childhood cancer and help them get involved in the fight. 
One way to get involved is to donate money to organizations that fund research for childhood cancers.

Currently, only 3% of federal funding for cancer research is focused on childhood cancers.
Childhood cancer is not just one disease.
There are more than 25 different types, each requiring their own research.
Childhood cancer is not the same as adult cancer.
Separate research and treatments are required.
This year, CURE is funding $2.5 million in research.

During Childhood Cancer Awareness Month and beyond, CURE Childhood Cancer is committed to educating people about childhood cancer and empowering them to fight back. So how does childhood cancer become a priority cause in this country?  The journey begins with each of us.  We need your help to raise more funds and more awareness.

This year, CURE Childhood Cancer will honor Elena and Liv on September 13th. 
This link will take you to the girls' page:
http://bit.ly/1AaG7HC

You do not have to wait until the 13th to donate. You can donate all month long.
As we have in the past, our goal is to raise as much money as we can to help fund research that will lead to better treatments and cures for pediatric cancers. Childhood cancer is severely underfunded and will never make the progress it needs to without money for research.

Money + Research = Cure

We hope you will help and share our story with your friends and family and ask them to join you in donating in honor of our girls, their fight, their perseverance, and their grace.

Thank you for continuing to pray for us, care for us, and encourage us.
In Him,
The Tates


"For I know the plans I have for you." declares the Lord. "Plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Saturday, August 9, 2014

Results Update

Sorry it has taken us a while to share Elena’s test results with you.
We received the results about two weeks ago. It has taken us about that long to process it all.

Five years ago when we started signing all of those consent papers to authorize Elena’s treatment for leukemia, we were only focused on saving Elena’s life. Yes, we were aware of the harmful effects of the treatment, but we were simply trying to make it to the next day. Then following Elena’s relapse, once again we were signing consent forms and being told what impact treatment could have on Elena’s body. Today, two years after her bone marrow transplant, Elena is officially considered a survivor and we are having to deal with the negative effects from what enabled her to become a survivor.

We shared how we were feeling after Elena’s survivor clinic appointment in our last post. Overwhelmed, a little sad, and empty. Those feelings only got stronger after hearing the news of Elena’s tests.

We celebrated the news that Elena’s heart and lungs are working properly and that her blood counts remain strong. These are definitely big blessings! We were saddened to hear that Elena’s hormone levels and bone density scan were not good. In fact, her body is not one of a 15 year old, but that of a woman in menopause with osteopenia. Not easy words to hear or explain to a beautiful girl who has her whole life in front of her. While we are beyond thankful that Elena is alive, we struggle with the reality that what we did to save Elena’s life came at a cost.

When in the battle of surviving cancer, you look forward to the day you can be finished with everything and live again. You think the storm will end and that there will be no more crashing waves. Hearing the results from Elena’s tests also brought with it the reality that she will never be finished with this fight. Her brain, bones, and endocrine system and reproductive health have all been negatively impacted. She will always have to fight against the harm brought to her body.

She will soon begin physical therapy to help strengthen her body and stretch the ligaments and muscles that were impacted by chemo. This will hopefully improve her walking and physical activity. She has started taking hormones that her body is not producing to help with her bone strength and overall health. On Wednesday, she will see an orthopedist who will determine if she is at further risk for compression fractures in her spine. These were noted in her recent chest x-ray. He will also decide if Elena needs to see an orthotist. Elena will see her oncologist and endocrinologist in four months as they continue to closely monitor her progress.

So now, once again we have a choice and we have chosen once again to stand up. We can’t stay stuck in a place of sorrow of what has been lost. God has not brought us this far for nothing.  He has been faithful to walk with us, carry us, and see us through.  We are grateful. We know that even though it has been very hard, it could have been so much worse - and we are thankful for His mercy and help.  

We continue to ask God for healing of Elena’s endocrine system, for strengthening of her body and bones, and for her brain’s mental processing speed and comprehension to increase. Prayers continue to be lifted asking for His protection from all of the other potential long-term problems childhood cancer patients can face as consequences of the harsh treatment.

When we started this blog to keep everyone updated, we never dreamed we would still be blogging five years later. Thank you for walking with us and making a difference in all our lives!

In Him,
The Tates

"Rejoice always, pray without ceasing, in everything give thanks; for this is God's will for you." 1 Thessalonians 5:16-18


Tuesday, July 22, 2014

Surviving

Just wanted to post an update to let you know that we will not hear the results from Elena's survivor clinic tests for about another week.

What we did hear at Elena's doctor appointment was overwhelming.
While the survivor team at Aflac were wonderful, kind, knowledgeable, and compassionate, it was not easy to sit there while they went over page after page of information. Seeing in print what your child has been through is hard.

There were six pages outlining Elena's medical history, treatments, surgeries, procedures, complications, and diagnoses. After going over those pages, we went through the next five pages listing the fourteen different chemotherapy drugs Elena has received, the possible late effects associated with each drug, what tests will be used to monitor these and for how long. There was also all of the information on radiation to go over. So much information, so many possibilities, so many years Elena will have to be monitored. We left so overwhelmed. We also left feeling a little sad and empty.

We were already aware of possible late term effects and we knew the list was long. We had seen the information before in each consent form we had to sign...heart damage, lung damage, decreased lung function, kidney damage, liver damage, eye problems, hearing problems, fertility problems, thyroid issues, growth issues, psychological issues, bone damage, joint damage, nerve damage and secondary cancers. It all kind of puts a damper on any celebratory mood.

Days after this meeting with the doctors, we are still trying to process the news we heard. One thing we have learned is that surviving means once again surrendering.

Surrendering to God. Just like we surrendered Elena to Him when she was first diagnosed with cancer and again when she relapsed, we have struggled to surrender ourselves to Him. Over the past five years, we have had to surrender our plans, dreams, hopes, thoughts, fears, anger, sorrow, and bitterness to Him over and over again. Only in doing so, could we experience joy.  Surviving alone does not bring great joy. It takes surrendering to find that.

In Him,
The Tates

"Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I entrust my life." Psalm 143:8
"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight." Proverbs 3:5-6 
 
"Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails." Proverbs 19:21