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A Prayer for Help [helloHOPE Community Prayers]

Mountain sunset with headline and excerpt: A Prayer for Hope - helloHOPE Community Prayers

Our desire is that helloHOPE would be a source of encouragement, hope, and strength for families facing medical adversity. We believe that the Lord can strengthen and sustain us in ways that no one else can. Our prayer is that He would meet each person who visits our site or interacts with our resources in a practical and tangible way. Whether you’ve been following us for a while or this is your first time visiting helloHOPE, we have prayed this for you…

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A PRAYER FOR HELP

Father God, today we come to you asking for help. You are the Creator, and the God of the universe, and still, you pay attention to every aspect of our lives down to the smallest detail. So, in humility, we simply ask for help.

Many in our community are feeling overwhelmed, burdened by financial stresses, worried about the future, or just tired. We know that you are present with us in the good and the tough times, so we lift our eyes up to you now.

We ask that you would mobilize practical help today. From meals to cleaning to yard work, please send people to lend a helping hand with the physical things that our community needs.

We ask that you would send financial provision. We know of so many stories where provision came from the most unexpected places. Help us to hope for and trust in provision from you.

We ask that you would send a listening ear. Sometimes the most helpful act is the presence of a good friend that’s just ready to sit with us and hear what we’re going through.

We ask that you would send helpful advice. You provide wisdom through your Word, friends, doctors, and nurses, so we ask for clarity and help in navigating decisions.

We ask that you would encourage hearts. Our greatest help is in you. Help us to remember the things that Jesus endured so that he could empathise with our circumstances. Make us aware of your presence with us.

We know that we are not meant to walk through our circumstances alone, but sometimes it can be a lonely place when we feel like we need help. We also ask that you would give our community the courage to ask for help from family, friends, and coworkers when they need it.

We declare that your promises are good. Even as we pray for help, give us the courage to choose hope and open our hearts to trust you more deeply. We love you. Amen.

Psalm 121; Hebrews 4:15-16; Psalm 46:1-3; Proverbs 3:5-6; Isaiah 41:10

Are you looking for ways to encourage a family that needs help? Check out these resources:

Are you facing medical challenges with your child and need help? Check out these resources:

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Free Parking Day

Update: Y’all are an incredible community!! Thank you so much to everyone who has donated and shared! In just four days, you have helped us reach 46% of our goal to surprise 2,000 families at Children’s Healthcare of Atlanta with free parking. Just over $3,000 is still needed –– consider donating today and sharing with your friends!

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Did you see the buzz on Facebook this week? We have a FUN opportunity to rally our city for good and surprise 2,000 families at CHOA with a random act of kindness that will point them to hope! You can find more details here.

Here’s the jist:

Have you ever had the person ahead of you in a drive-thru pay for your order? It’s one of the best feelings! And such a great example that a small act of kindness goes a long way in spreading cheer and hope.

We invite you to join us in bringing hope to families at Children’s Healthcare of Atlanta by making a tax-deductible donation to pay for their parking for a day. Imagine this: a parent or visitor pulls up to the garage attendants, hands them their ticket, and instead of a dollar amount flashing on the sign, they hear these words. “Your parking was paid for by helloHOPE!”

How free parking spreads hope

As a family walks through the tests, treatments, fears, and burdens associated with a diagnosis, you can help them remember that they are not alone and that provision can come from the most unexpected places. The small gesture of paying for parking might be just the pick-me-up that someone needs to hold onto hope for the day.

Our goal for free parking day

We’ve set our goal at $6,000 for this campaign, which will enable us to pay for the parking for every car that goes through the Egleston and Scottish Rite campus decks on June 28, 2017.

What happens if we exceed our goal? We’ll be expanding the program to cover future free parking days, maybe in a city near you!

Will you join us? Give today. Let’s spread hope!

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Neurofibromatosis Type II: Ilya’s Story of Hope [Part 2]

Ilya's Portrait | Neurofibromatosis Type II (NF2) Story of Hope, Part 2, Brain Surgery

As we’ve gotten to know Ilya and his dad, Todd, we’ve been impacted by their deep and genuine hope and transparency in dealing with the unexpected difficulties of life. We recently had the honor of sitting down with them to get the latest updates on how life with neurofibromatosis type II is going. Their story is truly an inspiration. You can read part one of their story here.

Complications with Neurofibromatosis Type II

Nearly three years ago, Ilya was diagnosed with neurofibromatosis type II, or NF2, which causes non-cancerous tumors to grow throughout his nervous system. Early on, he and his dad, Todd, wrestled with the different NF2 treatment options and decided to carefully monitor the growth of the current tumors and treat specific challenge areas as they come up.

In mid 2016, Todd and Ilya took what they thought was a routine trip to Massachusetts General Hospital, where Ilya is seen by a top NF2 specialist, to check on the tumors. What they discovered shocked them both –– Ilya’s doctor recommended brain surgery to remove one particularly troublesome tumor that had started putting pressure on the brain stem.

The prospect of brain surgery was a brutal reality for Todd and Ilya to take in.

They took time to process the decisions that lay in front of them and soon put a surgery date on the calendar. As the seasons changed, though, Ilya began having seizures, which brought an added level of urgency to the impending procedure.

Todd was overseas for business during those first seizures, which he describes as “terrifying.” Being on the other side of the globe with no ability to quickly hop on a plane to come home sent him straight to a local church where he spent hours praying for his son.

Back at home with his grandmother, Ilya was shaken by the seizures, which left him injured, confused, and with some short-term memory loss.

Brain Surgery to Remove the Tumor

Todd, an incredible advocate for his son, was able to get the date moved up, and on December 7, 2016, Ilya underwent surgery to have the tumor removed. The surgery lasted for over 14 hours, with a total of 10 doctors and 15 nurses present. Finally, after 18 hours, Todd was able to catch a glimpse of Ilya as he was wheeled into the Neuro Intensive Care Unit (Neuro-ICU), a moment Todd will never forget.

The good news was a relief: the doctor was able to remove 99 percent of the tumor. But they would discover over the coming hours and days how much the length of the surgery had taken its toll.

As the nurses and doctors evaluated Ilya in recovery, the first thing they noticed was stridor, high pitched breathing and a sign that his airway wasn’t clear. They learned that his vocal cords weren’t moving enough to allow him to breathe properly, and the medical team decided to re-intubate (re-insert the breathing tube) and keep Ilya heavily sedated for the next few days to give his partially-paralyzed vocal cords time to rest. Over the subsequent days, the nurses and doctors would briefly rouse him every couple of hours to check for brain function.

Todd with Ilya after brain surgery | Neurofibromatosis Type II (NF2) Story of Hope, Part 2

It was a long five days that Ilya spent uncomfortably and mostly in a fog, while Todd continued to pray and hope for his son. Ilya remembers the final removal of the breathing tube being the greatest relief, and a weight lifted off Todd as he learned that Ilya would be able to breathe on his own.

What was supposed to be three or four days in the hospital for recovery turned into 24 days with more complications (like port problems that resulted in atrial fibrillation, or afib) and a transition to a rehabilitation facility.

Finally, Todd and Ilya made it home on New Year’s Eve.

With continued rehab work a couple of days a week, Ilya moved from wheelchair to walker to cane, and before long he was walking without assistance.

The Next Challenge with NF2

With a successful brain surgery and recovery behind him, Ilya was ready to focus his attention on a strong finish to his senior year of high school. But in February, Ilya began experiencing serious leg pain that was traced back to another tumor. In addition to the leg pain, he began experiencing intermittent episodes of troubled swallowing and breathing.

With another trip to Mass General to evaluate the situation, they decided to try a nerve block medication in an effort to delay the need for surgery. But when they realized that the tumor was beginning to cause serious damage, they were left with one option –– surgery.

Ilya’s surgery to address these concerns is scheduled for April 25, and he is optimistic and determined to recover quickly so he can accept his diploma in person.

Processing Emotions with a Chronic Disease

As we talked through the happenings over the last few months, including many worse-than-expected moments, we asked how Ilya and Todd were processing through the emotions and events.

Ilya was eager to share these words, which he explained have been reassuring to him in the uncertain circumstances:

“Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”
Romans 5:1-5

Ilya described how these words have impacted him, “For me, it says, ‘You’re not alone, and something good is going to come out of this.’ Obviously you’re not going to see it at the time, and it may take years before you start seeing it, but God has a plan that is going to be good.”

Todd also weighed-in on the burdens of the last year, admitting that there are still times when they both deal with sadness, fear, and anger. But he has drawn comfort in remembering that these emotions are human and something that God is intimately familiar with. He pointed us to a passage in Job:

“Behold, I go forward, but he is not there,
and backward, but I do not perceive him;
on the left hand when he is working, I do not behold him;
he turns to the right hand, but I do not see him.
But he knows the way that I take;
when he has tried me, I shall come out as gold.”
Job 23:8-10

In the pain and difficulty, Todd explained to us that he knows that God is in the middle of it, even when emotions are raw. He elaborated further:

“In Job 23, he’s right in the middle of everything. He has this faith that even though he can’t see God, that God knows his path. Although Job was mad, he never quit believing in God. It’s just beautiful. Job was likely the earliest written book of the Bible. It’s almost as if this is the first thing God’s telling us, almost the first thing that God gave us.

I take comfort that God knows our path, too. Life gets really bad sometimes, and you’re not always going to understand it. At one point I thought this was going to wrap up neatly like a story in a movie. That’s just not the way life is. Life is more like a song. It goes on and leaves you with something. It’s a shaping experience.

It’s easy to not think about brokenness and draw into something to make your world really small, to not know the suffering that’s around you. It’s tough, but it’s a growing experience as well that has forced some tough conversations. We’ve had to prune away some things that just aren’t worth getting upset about.”

I love the way that Todd and Ilya have both agreed that it’s okay to be mad or down or just go to watch a movie and be silly. They also have committed to openly sharing with each other and giving space when needed or allowing time to simply zone out. They’ve approached their challenges as a team, and the strength of their relationship and commitment to each other, and their faith shows.

Turning to the Future

As we dialogued about the events of the last few months, we also asked Ilya about what he thinks about and sees for the future. To hear him unpack his hopes and dreams with no hindrance from the NF2 diagnosis is truly inspiring.

Ilya is excited about moving, going off to Gordon College, and pursuing a career where he can have an impact on others. And it’s clear that he is more focused on the opportunity ahead than the potential challenges:

“I don’t think about NF holding me back. That never crosses my mind because I know that [my dad] is always going to be there for me, God’s always going to be there, and there’s always going to be a way through it. So I don’t let it be a question of ‘what if’ when I think about the future. No matter what, God’s going to be there, dad’s going to be there, and there’s always going to be hope.”

About Ilya poster at hospital | Neurofibromatosis Type II (NF2) Story of Hope, Part 2, Brain Surgery

Wrapping up our time together, we asked Todd to share what he sees when he looks at his son navigating through life. Todd’s love and admiration for his son is apparent:

“I think of courage and the incredible blessing that [Ilya] is. God put us together. There’s so much that I would have lost, and I wouldn’t be the man that I am or want to be. Right now we’re going through challenges, but I think about the future for him. Courage, the blessing of where we’ve come, and the future of how this will shape him. Physically there are a lot of challenges that come with NF, and we don’t know where that leads us, but I’m excited about his future, I really am.”

We love Todd and Ilya’s optimism and the immense courage that they have both shown in facing NF2 with hope. Will you join us as we pray for the upcoming surgery and beyond?

Ilya expressed immense gratitude for the support he has received from the Cornerstone Preparatory Academy administration, counselor, and campus pastor. They have encouraged him to focus on his health while recognizing the ways that he’s learning and growing through these experiences. He and Todd also made a point to mention the strength and encouragement that they’ve received from the many hand-written notes they’ve received.

If you’d like more of the background on the discovery of the diagnosis, read part one of Ilya’s story with neurofibromatosis type II.

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A Prayer for Clarity [helloHOPE Community Prayers]

Mountain sunset with headline and excerpt: A Prayer for Clarity - helloHOPE Community Prayers

Our desire is that helloHOPE would be a source of encouragement, hope, and strength for families facing medical adversity. We believe that the Lord can strengthen and sustain us in ways that no one else can. Our prayer is that He would meet each person who visits our site or interacts with our resources in a practical and tangible way. Whether you’ve been following us for a while or this is your first time visiting helloHOPE, we have prayed this for you…

— — —

A PRAYER FOR CLARITY

Lord, we come before you today thankful that you are our Rock. Your character is unchanging, your words are true, and your promises good.

It is easy to feel overwhelmed by pressures, demands, circumstances, and news that can rock our world. You are an anchor for us, keeping us steady. We ask today for you to give us clarity.

When our world feels noisy and confusing, bring us your peace.
When chaos surrounds us, be our center.
When our mind is consumed with every worry, lead us to your still waters. Restore our soul.
When we don’t know how to navigate unchartered waters, give us your strength.
When we are at a crossroads, guide us with your wisdom.

We praise you, Lord, that your words are perfect and bring renewal to our life. Your word is trustworthy, full of wisdom for all. Your laws are right and bring us joy and light as we walk in the way you have created for us. You are pure, eternal, and right. Your truth is better than anything we can dream, desire, or imagine, and walking with you brings life to our souls.

Open our heart to your word and the life it brings. We love you. Amen.

Isaiah 26:4; Hebrews 6:19; Hebrews 7:2b; Mark 4:35-41; Psalm 23: 2-3; Psalm 18:32; Proverbs 3:5-6; Psalm 19:7-11

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Chronic Myelogenous Leukemia: Madeline’s Story of Hope [Part 2]

Madeline at graduation with headline: Madeline’s Story of Hope with Chronic Myelogenous Leukemia CML Part 2

Last week we shared the story of Madeline Gaffney’s diagnosis with Chronic Myelogenous Leukemia through her parents’ eyes. This week, we have the privilege of sharing Madeline’s perspective with you.

Madeline Gaffney was just days away from her fourteenth birthday when her pediatrician detected cancer cells in her blood work. She was immediately admitted to Children’s Healthcare of Atlanta for emergency treatment.

When Madeline arrived at the hospital, she was not yet aware of her diagnosis. “I didn’t have much of a concept of what could be wrong with me, and I also don’t think I thought about kids having cancer, so that wasn’t even remotely in my mind.” When her doctor told her that she had Chronic Myelogenous Leukemia, or CML, Madeline says that she felt out of touch with the reality of the situation. “I didn’t cry immediately, I just felt stunned,” she remembers.

Over the nine days she spent in the hospital she was sedated to help her endure intensely painful twice-daily blood transfusions and chemotherapy. This kept her groggy and contributed to her being unaware of how much danger she was facing, which she now realizes was a blessing. “I think that helped me stay optimistic and keep fighting.”

Madeline credits her parents’ positive attitudes with keeping her afloat and helping her to have courage throughout exhausting treatments. “Even though it’s a physical [illness] and your body needs to heal, I think it’s also a mental game, and that’s why positivity helped … it takes some mental toughness to fight something like that.”

Madeline in the hospital with colorful blanket | Chronic Myelogenous Leukemia CML Hope

Facing the Diagnosis of Chronic Myelogenous Leukemia

Later, during more vulnerable moments, Madeline began to realize how her parents had put on a brave face for her, outwardly appearing determined and optimistic, while inwardly wrestling with their own fears and grief about their daughter’s illness. She remembers her mother and father alternating nights sleeping on a couch in her room to keep constant watch over her.

One instance in particular sticks out to Madeline as the moment when the seriousness of her disease became real to her. While in the hospital, Madeline’s parents and nurses helped her brainstorm ideas for her Make a Wish Foundation wish. One day, after returning home, Madeline was reading through some of the foundation’s literature when she discovered that the organization helps children with terminal and life-threatening illnesses. She went to her mother, Ellen, to tell her there had been a mistake –– she didn’t qualify for the program.

Ellen explained to Madeline that her leukemia was, in fact, life-threatening, and took her daughter through the diagnosis. Though they had no idea how sick she was when she arrived at the hospital, had she not received medical intervention at that time, she would have died. Overwhelmed by this news, Madeline retreated to her room. “I just lost it,” she remembers. “I realized that it was not just me living my life, but that God had me, literally, in the palm of his hand, and had timed everything perfectly for me so that I could live and have this second chance. I was two weeks away from dying, and it all turned around.”

Defining Hope After Leukemia

When asked how Madeline defines hope, she points to her faith, saying that the precise timing of her diagnosis and treatment gave her a concrete awareness of God’s presence in her life. The outcome of this faith is a deep sense of knowing that in any circumstance she can still have joy, because of her hope. “It’s an inner sense of encouragement that things can get better, that they will be okay, regardless of the situation you’re in,” she explains.

Jeremiah 29:11 has become an important verse to her family, perfectly reflecting their experience with Madeline’s disease:

“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.”

“One time my mom asked me, ‘If there’s one thing in your life you could change, what would it be?’ And I think I said I’d rather be two inches taller, and she said, ‘You wouldn’t wish that you didn’t have cancer?’ and I said, ‘Absolutely not … it was a defining moment in my life, and also a turning point in my faith.’”

Giving Back and Looking Ahead

Madeline says that feeling like she’s been given a second chance has helped her to be more analytical and self-reflective, but has also given her a positive, glass-half-full outlook. “It forced me to grow up in a good way, and this gave me more perspective on life … life is short, not every day is promised.”

Having CML led Madeline and her family to work for better outcomes for other childhood cancer patients, because they’ve been so personally affected. “I would never take back the time I was sick, because it grew me so much,” she says. ”It continues to grow me, because it’s not something that’s just done now. It’s part of my life, but for the better. Now [my family] has a way to give back and do something greater than ourselves.”

In addition to learning how to give back, Madeline says that her experience also helped her to learn the depth of her own capabilities. Having overcome cancer, she now approaches life with a “what else can I do?” attitude.

Madeline’s hope makes her an inspiring young woman and is leading her on to big adventures. She’s spending her summer studying in East Asia and will graduate from Georgia Institute of Technology’s industrial engineering program in December.

Madeline cheerleading, with Coca Cola sign, and with Buzz | Chronic Myelogenous Leukemia CML Hope

You may also be interested reading about the Gaffney’s experience facing the diagnosis of Chronic Myelogenous Leukemia from a parent’s perspective.

 

About the Author

Catie Cummings-Morris is a freelance author specializing in non-profit work and food writing living in Chattanooga, Tennessee, with her husband, daughter, and a vegetable garden.

 

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