Our StoryMy name is Melissa Hogan. I am happily married to my husband, Jeremy Hogan, since March 15, 2003. My husband is the assistant superintendent at our local school and I am a paraprofessional at the school also plus in back in college to earn a nursing degree.
Our journey started when I gave birth to our baby boy, Hestan Brent Hogan, in November of 2003. Shortly after birth we discovered that H…
We were told after we had Hestan..that we had a less that 2% chance or any future children of ours having heart problems..it didnt run in our family history and Drs said it just doesnt happen..its like lightning striking twice!
We found out at 5 months pregnant that our 2nd child…Brynlee Hope Hogan..would be born with similar heart condition as her brother. We were shocked and devistated. Brynlee was born on July 11, 2007 . Her heart condition was listed as a Double Inlet Left Ventricle and Transposotion of the Great Arteries. Brynn had her first surgery at 9 days old and her 2nd at 5 months old..and has a surgery coming up this summer (summer of 2011).
Both kids are doing very well and are as “normal” as can be. Hestan is in 3rd grade and is very smart and plays soccer with a soccer league. He does get tired easily and has to rest some..but he knows his limits and accepts them. Brynlee is in dacne and ballet classes and loves that! The kids are miracles and blessings to our lifes. Its actually been a good thing for our family! The kids have matching scars..go to Dr appointment together..take the same meds..both have the same limits..and one cant to anything the other cant..it works very well for our family..God knew what he was doing when he put them into our lives! We are very blessed to have been “The Chosen Ones” to be Hestan and Brynlees parents.
I was diagnosed with a rare form of Tongue Cancer in May 2009..at the age of 26. It came a a complete shock..as I am not a smoker drinker or tobacco chewer. I had a surgery in May 09 to remove 1/3 of my tonuge then underwent 7 weeks of intense oral radiation at MD Anderson Hospital in Houston TX over summer 2009. I recover well and lived a normal life for a month after treatment..then started having all the same symptoms I had when I first found my cancer. My cancer came back in Dec 09..and was awful. I had a major surgery then to remove almost my entire tongue. Drs took muscle and tissue from my right thigh to build me a new tongue. I had a feeding tube and trache for a while. I am left with horrible scars..missing teeth..not very clear speech..and trouble eating..but im alive. Ive been told that if my cancer returns..i have no hope. My cancer doesnt respond to chemotherapy..Ive had all the oral radiation the Drs can do..and I have no options for any further surgery. However..my family is strong believers in God and we have Faith and Hope and just know that I am going to be ok!
I remember being told after Hestan was born “God gives special babies to special people” I beleve God chose us for a reason to be parents to 2 such special kids..and I do not think God would give them to me..and then take me away from them! God has a reason for everything..and one day we will see the bigger picture..and until them..we just trust in him and believe in him and have faith in him..we have no choice but to. He has allowed us to witness many miralces..such a blessing!
Thank you for your interest in our family! Prayers are always needed and greatly appreciated!
Below is a story that was published in a newspaper in Wichita Falls Texas a few years back.
Jeremy and Melissa were married in March 2003 and wanted to immediately start a family! Their first son Hestan Brent was born November 12, 2003…and thats where this journed begins!
In heartbreaking moments of flat lines and seeing CPR performed on her children, she has stayed by their sides, fighting for them.
“I’ve whispered in their ears, ‘Come on, Mommy wants you here,’ and seen them come back so quick,” she said.
The world shifted for Melissa and Jeremy Hogan, who live in Cache, Okla., in the hours after their son Hestan was born. He was taken from United Regional to a hospital in Dallas, and was diagnosed in his first days of life with a major heart defect related to a severely underdeveloped ventricle. The rare condition is called Hypoplastic left heart syndrome.
Jeremy and Melissa had no reason to believe the condition would also affect Brynlee, who came along a few years later. Doctors told them it would be like lightning striking twice. But the diagnosis came while Melissa was pregnant. Brynlee, too, has a heart condition.
Looking at the two bright, smiling children, you might never guess they were sick. The skin hidden by their clothing tells their story with “maps all over their bodies of scars,” Melissa said.
Both children are survivors of open heart surgeries with the promise of more in the future.
Melissa, poured everything into caring for her two little ones with special needs.
So when she faced her own diagnosis of cancer — an aggressive form that first showed its presence in a sore on her tongue — in 2009, she didn’t know if she had it in her to fight.
But Melissa put up the fight of a lifetime.
“God gives special babies to special people,” she said. She knew Hestan and Brynlee had come into their lives for a reason. “I might not have much longer,” she acknowledged as she made her decision, “but only God knows that. They need me, and my husband needs me.”
Fighting cancer head-on
With family, friends and people they have never met praying for them, encouraging them and helping to raise money to help with their medical expenses, the family has forged ahead. A website, www.melissahogansheroes.wordpress.com, updates the family’s progress and ways to help. A Fight Like A Hogan Facebook group now has close to 6,000 members. The support means more to them than anyone could know.
Melissa’s cancer led to surgeries and weeks of ravaging radiation during the summer.
Her mother, Pam Woods, a labor and delivery nurse, stayed with her when she was in Houston for radiation. Melissa couldn’t really eat, so Woods waited until her daughter slept to eat part of a chicken salad sandwich, which lasted for days. She found herself not eating much, either.
Melissa had a clean scan in October, but the tongue cancer returned with a vengeance in December. She started having ear pain like the pain she experienced before she was diagnosed earlier in the year, and she had a new sore on her tongue.
“It was a lot worse than it had been,” Melissa said of the news the PET scan revealed.
She returned to M.D. Anderson in Houston, and had more tests and a biopsy. She also faced another surgery, a difficult one that would have lasting effects. She would have teeth removed, and would lose all but a sliver of her tongue, having it replaced with muscle from her leg. She might never talk again, they told her, and would probably need a feeding tube for a long time.
In the days leading up to the surgery, she was comforted by the fact that her plastic surgeon would be the chief of surgery at the hospital, a doctor with years of experience in that area. Then the news came that he was out of the country, and wouldn’t make it back in time.
“I was very upset about it,” Melissa said. She knew the plastic surgeon who would take over would be younger, and she was worried. But her first meeting with him erased any doubt.
“We just hit it off,” she said. “We joked, we laughed.” His children are about the same ages as Hestan and Brynlee. She pictured him thinking of his own family as he handled her surgery, a thought she found comforting.
The 14-hour surgery involved the painstaking task of linking blood vessels with the radiation-damaged vessels in Melissa’s neck.
Melissa could not close her mouth after the surgery for about a month.
As she recovered in the hospital, she spent hours practicing her children’s names. Hestan’s was hard to say.
“I would get so aggravated,” she said. “I would keep saying it over and over again.”
She wanted to at least be able to say those precious names by the time she went home.
Dec. 23, the day before she left the hospital, Woods was sitting with her, and Melissa hadn’t said anything that day. And then she had a surprise.
“She covered her trach,” Woods said. “She said, ‘I love you, Mom.’ I went to pieces.”
Woods figures her daughter was practicing on her so she could say “I love you” to her husband a little later.
“I was so excited figuring out I could say ‘I love you,’ ” Melissa said. “If that was all I could say, it’s the best thing to say.”
Woods made about 10 calls and told the people on the other end of the line that Melissa had something to say, and then she would tell them she loved them.
Dec. 24, Melissa left the hospital, and with the snowstorm that hit Texas and Oklahoma on Christmas Eve, there was a stay overnight in Fort Worth at the home of the children’s cardiologist.
At home, Woods helped the Hogan family, and so did Jeremy’s dad and his mother, who stayed for months.
Jeremy, the assistant superintendent for the local school system in Cache OK, helped Melissa with her trach and her feeding tube, which the children also learned to help with.
“They both take good care of me,” she said.
Jeremy helped Melissa with everything. He helped her bathe and get ready for the day, once even using a straightener on her hair.
He never acted as if any of it was a burden.
“It brought us a lot closer together,” Melissa said. “If it happened to him, I would do the same thing.”
Working out has helped him get through these times, she said. She knows it hit him hard the day they asked her doctor about her prognosis. The doctor asked if they wanted sugar coating or honesty, and the family asked for honesty. The doctor said he had been worried about Melissa since she was diagnosed, especially at her young age. Jeremy hadn’t thought about the possibility of Melissa dying before then, she said.
If the cancer comes back, Melissa’s doctor told her he could use chemotherapy to prolong her life, but it wouldn’t get rid of the cancer.
If the cancer were to return, Melissa knows that more than likely, it would be fatal.
“Our prayer is just that it doesn’t come back,” Woods said.
Ear pain recently sent Melissa back to the doctor, where she learned it wasn’t the result of a recurrence of cancer, but was instead from TMJ, which likely stems from the new process she has to use to eat because of her new tongue.
Instead of eating a full meal as she once would have, now, no longer relying on a feeding tube, she eats maybe a quarter of one, but is too tired from the work involved to continue.
The difference she has noticed in her speech hasn’t been an easy adjustment.
She has run into a few people who have not been kind.
Their reactions are far from the ones her friends and family have had.
“We’re just so glad she’s talking,” Woods said. And she’s doing that so well, her plastic surgeon wanted to record her speech.
She catches some people talking to her slowly and loudly.
Often she tells people she just had surgery to explain that they need to listen closely, and doesn’t disagree when they ask if she had teeth removed. She doesn’t go into her full story. She doesn’t want pity.
This has been hard for her because she likes to talk, but more importantly because she wants to read stories to her children, and to carry on conversations when their friends come over.
“Any day away from my kids is a day too much,” she said.
Pieces of her heart
When Hestan graduated from kindergarten in 2009, it was cause for a huge celebration. That’s the case, as Melissa wrote on her Facebook page, with many milestones some might see as small steps. Birthdays are a big deal.
When Hestan was a newborn, a doctor didn’t know if he would see his fifth birthday.
Now 9, he is soaring ahead in school. His teacher believes he’ll be a genius at math.
Hestan, who enjoys being in first place, worries about numbers and the alphabet, because none of them except “1” and “A” ever get to be in first place.
It was hard for his parents to tell him that he would probably need heart surgery this summer, when he looked forward to splashing in the water park. Problems with a valve had been getting worse, and the family expected his surgery would come this month, with surgery for Brynlee to follow in July.
“Mommy, I don’t want to have surgery,” Hestan said. Melissa explained that God had made his heart and his sister’s heart different. She suggested he pray, and they would leave the answer up to God.
The family was sitting at a conference table the next day when the doctor told them Hestan didn’t need surgery this year. There had been some improvement — not a lot, but enough — that would allow it to wait until probably next year. Brynlee’s will wait, as well. Melissa sees gifts from God in the news.
Every bit of time helps in Hestan’s case, because if the valve can’t be repaired, it will have to be replaced. Because the replacement won’t grow with him, it would start the clock ticking toward the need for a heart transplant, Melissa said.
When Hestan learned he wasn’t going to have surgery yet, he told the doctor he and his mommy had prayed, and he thought he might try praying the next night for a swimming pool.
Brynlee collects purses, and likes to take three or four, along with a baby doll or two, everywhere she goes. She has a hair bow to match any outfit, and is quick to notice people’s shoes and purses.
Woods said Melissa was a quiet little girl when she was Brynlee’s age, but she sees a lot of herself in her granddaughter.
Woods and Melissa aren’t just mother and daughter, but best friends.
When Woods was having an extremely hard time dealing with Melissa’s cancer fight, Melissa gave her the answer she needed. She explained how she has come to think of it. If something were to happen to her, she believes it might be because she can’t bury her children, but instead she will be in Heaven waiting for them when they get there.
With bad comes good
Melissa and Brynlee this week won a mother-daughter look-alike contest put on by KFDX. Votes determined the results. Melissa was touched by a message from one of the other contestants, who told her this would be so special for her and Brynlee, so she asked people who would have voted for her to vote for the Hogans instead.
Not knowing what the future holds, Melissa hoped the contest would be something special she and Brynlee have shared.
Woods and Melissa have also cherished the time they have spent together. These experiences have shown Woods how short life is.
Before the family ever started down this path that includes so many health problems, Melissa’s goal was for her children to outlive her. That has taken on whole new meaning.
Melissa will serve as the honorary chairwoman of this year’s Relay for Life in Wichita Falls, which celebrates cancer survivors and remembers those who have lost their battles.
With everything this family has lived through, their eyes are open to the struggles of others. As hard as the past few years have been for them, they know the massive buildings at M.D. Anderson are filled with people fighting all types of cancer, and they have stayed in touch with many of the people they met as Melissa went through radiation.
The children have both lived with hearts that need help, but the family knows many at the same hospital have dealt with heartaches they can’t imagine.
Melissa said in some ways, she will always have a little respect for her cancer because it has taught her how to fight as hard as her children do.
She has her share of hard days, too, but has not relied on medications or staying in bed to get through them.
“I wanted my kids to see me fight, and say, ‘I want to fight like my mom.’ ”