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! 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 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:

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

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