Mike's Story

Truly Inspiring: Nathan’s Story

Posted on May 30, 2012by The Brain Tumor Foundation for Children

Nathan was diagnosed in February 2010 with a desmoplastic infantile ganglioglioma, just five months after his father, Mike, had been diagnosed with bladder cancer.  After a few months in Nashville, at Vanderbilt, Mike and I moved Nathan’s care to Duke University’s Brain Tumor Center in Durham. We have been in Durham almost 20 months now.

Nathan’s diagnosis was so devastating and we wondered if he would see his 3rd birthday.  He had to deal with surgeries, complications from the tumor, side effects of the chemo, the home pharmacy of over 30 doses of meds per day, PICC lines, allergic reactions, fevers, a NG tube for nearly 10 months and meds every 3-4 hours around the clock. Nathan’s had two major craniotomies, at least six shunt revisions, eight different chemo drugs over three protocols, MRSA and many hospitalizations.  He’s even had to learn to walk again – twice more – and lost most of his language and fine motor skills.  Thankfully, July 2011 was Nathan’s last hospitalization.  His shunt failed twice in one week so he got a new programmable shunt.  We have had a very blessed year since! 

Spring 2011 brought some relief, Nathan’s chemo drugs changed, we finally got the shunt functioning correctly, the NG tube was gone, he started eating McNuggets, he was down to four doses of meds and continued with PT, OT and ST every day.  We were able to finish out the year and the drug protocol.

Unfortunately, Mike’s cancer started to spiral over the summer.  Despite everyone’s best efforts – Vanderbilt’s, Dukes and Cancer Centers of America – Mike lost his battle with cancer in December 2011.  We were home in Tennessee, surrounded by family.  He fought long and hard for himself and Nathan. 

January 2012 came and Nathan & I had to get back on the plane to Duke to continue on with Nathan’s treatment.  February brought the end of 22 months of chemotherapy.  He is on his first official break.  “Frankie” (the tumor) has remained stable since last May and is still diminishing.  It has been six weeks since the last treatment and the MRI looked good.  Nathan is still battling the side effects from the last drugs and going to rehab therapy daily. 

We wait for the next MRI on June 8th, praying all will still be stable.  There is a chance “Frankie” may never grow again – may just hang out forever.  Or, it will wake up and we will start over again.  Nathan and I will remain at Duke as long as it takes – close to the hospital and close to the rehab hospital for therapy.  MRI scans every 12 weeks and addressing a few complications that have arisen since diagnosis which will include at least one spinal surgery.

Nathan’s development is about two years behind normal.  I am so thankful every day that he is able to walk and play.  He is so happy, content and loving.  His speech is progressing slowly but his communication is exceptional.  Physically, Nathan is doing great.  He loves pool therapy, his strength and endurance has grown so much.  Occupational therapy is difficult as he has some sensory integration issues, but the progress has been phenomenal week-to-week.  The progress is slow but we are hoping, as the chemo continues to wear off, to make significant strides in the coming months.

We really don’t know what to expect this year.  I hope he goes into remission.  I hope it goes away.  I hope to go home to family and friends.  I hope Nathan can start school.  The list goes on and on.  However, today is full of grilled cheese, bike rides and Elmo.  And I can’t think of anything better than that!!! 

Nathan is on the homestretch to his 5th birthday in July.  Truly a blessing and a miracle.

Written by: http://braintumorkids.wordpress.com/

Why St Jude's Children's Research Hospital is So Amazing

St. Jude's Children’s Research Hospital

Why they are so successful with children and their studies

St. Jude’s Children’s Research Hospital has the biggest Brain Tumor science program in the country. They have an Oncology program which requires everyones help. Kids who live in this hospital are put under intensive care but at the same time they have a unique children’s programs that help kids feel more at home.

Kids at St. Jude’s Research Hospital are given three different therapy programs that help children get through surgical procedures and Chemotherapy. Kids have access to Music Therapy and Child Life Specialist. Music therapists bring many different instruments to the hospital bed or even into surgical rooms. Music is studied to help calm the children down. They sing songs, play instruments and even sometimes dance around. Music Therapy doesn’t always require children participating. The certain arrangement of sounds calm the children down. Child Life Therapy is a normal therapy but in hospitals, there is a difference. In hospitals they encourage play. Sometimes this play is normal everyday play and sometimes it is medical play. Medical play is a sort of play where the child gets to play doctor on a doll. But in real life, that is what is going to happen to them. They prepare for long MRI’s, surgeries, port access changes, chemo and side effects for chemo. In the long run it helps children live as close to a normal life as possible.

Another way they help keep the children feel good about their lives is their visitors. Their visitors come and make the children feel good. Some visitors are old friends and some are famous people. The famous people come and sing, dance, play or even spend the day with the kids. The celebrities come and hang with the kids to make them feel good and they become long fast friends. On September 25th, 2012 a group of celebs helped make a music video with the kids. They sang the song Hey Jude. The kids had smiles from ear to ear. St. Jude’s also has a pen pal program where kids from all over the country can be pen pals with kids in their living facilities. They are given the opportunity to gain back hope. St. Jude sends people part of the pals program window clings, bracelets, etc. In St. Jude they have another program called Play 60 come into their facilities to play 60 minutes of sports with the coaches. Kids have a blast with their guests!

At St Jude, They have many toys and activities to do. They have a playroom with art materials, board games, Electronics, legos,  and more! They give kids the chance to be a kid instead of just a kid in a hospital. They also have decorated rooms such as the lunch room. In the lunchroom they have great food, a balloon on every chair and they have a happy healthy environment. Even the people who wash the windows are cool. Say hello to Spider Man. The hero comes to St Jude’s Children’s Research Hospital to wash the windows and warm children’s heart. It is every boy's dream to be or meet a hero. This brings the children back to their old lives. At St Jude, they believe that there is a song in everyone. They give children the opportunity to make a song  in their recording studio. All the Cd’s are kept and are constantly being listened to. They make children feel at home by letting the children decorate their own rooms with posters, beads, pillows, blankets pictures, flags, drawings whatever they want. They have great decorations that help keep kids at home.

People at St. Jude take their jobs very seriously. They have non stop research programs that are contribute to the cure. They do this by monitoring children very carefully and documenting the progress. Also they take samples of medication, cells etc. They  put all these cells in water and put them on a microscope slide and then examine the cells for connections. A cure has not been found yet but it is expected to be found. They have many different therapies for all sorts of cancer such as brain tumors. Such as ice therapy. Ice therapy is the second choice of therapies after chemo. Chemo is toxic and it causes people to feel sick to the stomach a lot. People want a therapy that is not toxic. The main goal is to find a cure and we will get there with help from St Jude.

St Jude lets children continue their lives by having different classes or programs. They have a normal school or tutors to help children get the education they need. Depending on the child, they can get a personal tutor or a group class. They have all the normal classes and activities but not as much as kids in normal school. Some kids are not able to attend school until they regain speech, ability to walk, the ability to use your body and complete daily activities. After all the skills are re-learned, they can begin school. They keep the school at the child’s level to keep them on the right track. They also have after school or activities during the day or the week such as Martial Arts. Kids at St. Jude get the opportunity to attend this activity. They also have event to raise money involving martial arts. This teaches children it is ok to be a kid. Lets kick cancer in the butt!

In school, there is a different class that most kids don’t have. It is called Cure4Kids. This teaches children about what is going on in their body and how it can be helped. It is an interactive site that gives information that is easy to understand and that does not make kids sad. It teaches kids through games, reading, vocabulary, and videos. It also lets you ask question about some of the information. This helps kids develop a vague definition of what is going on with them and how the doctors, nurses and Oncologists are helping them. It also teaches them new vocabulary words that help them reference what the doctors are saying.

Their medical program has very high standards. If you go to St Judes Research Hospital, you have a 90% survival rate. They have very accurate studies and have the biggest brain tumor science community in the country. Dr. Scott Howard is the head Oncologist at St. Jude. He watches patients very carefully for symptoms such as Nausea, Trouble Breathing, Depression Etc. By doing this, the keep the children on the path to remission.

St Jude has a big process for remission. They have a lot of resources for remission. A remission is when the doctor doesn't find any more cancer cells in that targeted area or the area of the tumor. At St Jude, this is something to party about. Everyone gathers to the child’s bed and the party with confetti and signs.

 

 

   

Dealing with a Child with Cancer

    Having a child with cancer can change your life dramatically .
          There are more nights at the hospital then there are at home. If you have more then one child then you might be paying less attention to your other children  Also, this can cause financial difficulties. More importantly you want your child to be happy and healthy and have a normal childhood. But how can you manage your life like this? Well, you should pay equal attention to all your children. You want the child who is sick to feel good, but the more you try to comfort him or her, the more the other child will feel left out. You want to keep the siblings out of the hospital but you want to update them on whats going on. You also want the siblings to play with the sick child and keep the sick child engaged in as many normal activities as possible. At the same time you don't want to overdo it. Keep the social activity to a minimal level because it can be very unsafe. Kids with cancer have a higher risk of catching common conditions like the cold or the flu!

         Financial effects are very hard to deal with. Between the hospital bills and bills in general, it just adds up. Some parents quit their jobs to support the child in the hospital. It just gets harder to support the family if you quit your job. The family might be living off the money of another parent or from relatives. That is not enough to cover all the bills. You should get a part time jobs. If both the parents have part time jobs on different dates, that means one parent will be able to stay with the kid in the hospital and the other will be able to work.

      Now your life just got a little bit easier, but who is going to clean the house or take care of the pet, if you have one? Consider asking a friend or a family member to help out with some chores or errands. When your child is asleep, you can run home and get as much done as possible!

I hope this is helpful!

The Genome Project in St Louis

At the Washington School of Medicine in St louis, they are conducting something called The Genome Project. This is the most prestigious cancer research in the world! It isn't just cancer, it is also HIV, facial deformities and so on. Genes can explain everything! These students and researchers have found many genes that cause these diseases. Certain genes that are combined with normal genes can cause different kinds of cancer. Some kinds of cancer a genetic and some are caused by the environment or food and so on. To look at the results of the genome project go to http://explorepcgp.org/#tab=pieChart

Patient Story: Connor Dykes

Meet Connor Dykes! Connor is a normal six year old who loves to laugh, sing, wrestle with his sister and go to kindergarten! From looking at Connor you can't tell he battled a brain tumor. For a six year old, that is a big battle to go through. Connor was six years old when he started to experience some unusual symptoms. He was throwing up and crying for long periods of times. It just kept getting worse and worse and there was nothing his parents can do about it. Suddenly his left side of his head and his eye start to swell up. This worried his parents so they took him to the hospital in Hudson, Wis. He started to get weaker and paler and started to shake. It started to get so bad they transferred him to an ambulance. His parents couldn't wrap their heads around his severe condition. When they got to the hospital they took a CT scan to determine what was causing his symptoms. The doctor came out to tell the family what was wrong. It turned out that Connor had a Brain Tumor. What was unusual and concerning is that it was the size of an average adult fist. The doctor referred  Connor to a neurosurgeon. They had a choice to get emergency surgery or lose their son. It was a risky decision but it needed to be done to save their son. This is really hard for the parents! You can only imagine!

 Four and a half hours later, they got the news they have been waiting for. The neurosurgeon told them that they had removed the tumor successfully. He also said that Connor was in a stable condition. Connor and his family was put in the recovery room. Connor finally awoke after a traumatic experience. Sadly, this was just the beginning. Connor was later diagnosed with Stage 4 Multiform  Congenital Gliomas. This is very aggressive tumor which means very innovative treatment. Connor went through 5 months of treatment. Then he had a bone marrow transplant. These are not always successful but Connor went through with flying colors. Connor is considered cured! Connor suffered some developmental disabilities. He gets better day by day! The only thing is that he wears hearing aids because it is one of the side effects of the aggressive chemotherapy. Another effect of the aggressive chemo is that he has o wear glasses because of partial blindness in the right eye. These side effects are very common for kids with brain tumors. This is also one of the symptoms of a brain tumor. Connor is a very extraordinary kid and he has been through a lot for his first 6 years!!

Credit to: http://www.childrenscancer.org/main/kids_stories/connors_story_surviving_brain_tumors/           

The Ups and Downs of Leg Amputation

Parents of children with Osteosarcoma or Leukemia might have to make a hard decision. If the cancer gets really aggressive, one of the options is amputation of the leg. It is hard for a parent to imagine having a child with one leg. There are some advantages. One of the advantages to amputating the cancerous tumor is removed and then the child will get a mechanical leg and the brain will learn to control the other leg. The only thing about it is that it makes it harder to walk fast or run faster. That can sometimes lead to social barriers. Also people who amputate the leg have a chance of a fear of looking at there own leg. It seems odd at first but in reality its not. It is actually a common fear among patients who amputate the leg. Id you get surgery on just the spot where the tumor is located then it will be harder to get the full tumor and it will make your treatment options harder and more aggressive. If you amputate the leg you will have at least a month of rehab to regain the control of the mechanical leg. It has become the desired option among parents after hearing the pros and cons. I hope this educated you on the pros and cons of amputating a leg!









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Oncology Latest

Hi, I am Sam! I really want to be a Pediatric Oncologist when I grow up. This blog will tell different kids stories and the latest studies for childhood cancer! I am a big nature supporter and I love to play sports. Researching and school are my first priority! I hope you enjoy!