What is a Port Access

A port access is a vein under the skin. This is used to insert chemotherapy and other related medications. This is used to go through the blood to remove unhealthy cells and tumors. The port can be accessed through the chest and the spine. It is easier for the child if you have a distraction. Ask the doctor to count before putting the needle in. Let the child push the syringe in. If they don't want to, let them watch TV or read or play video games. It's as easy as that!!

How to Tell your Child they have Cancer

Telling your child they have cancer is always hard especially for the parent. Some parents feel bad for telling their kids so they put it off. This is not good to do. When telling your child, you have to tell them in the right place at the right time. Do not do this in the child's bedroom!! The bedroom is supposed to be a safe environment. Tell them outside. There is a nice and fresh environment outside. This will help decrease the stress of the diagnosis. Don't feel bad if the child cries. Crying is just a child's way of coping with the diagnoses. If the child wants your comfort then you give it to them. Only give it to them for a limited time. Explain to the child what the cancer is doing to their body. Only use simple terms. If you use big words such as bone marrow or port access, your child will not understand which will make them more scared of what  is going to happen. Tell your child it is a bump in their (for example) stomach that is trying to them sick but the doctors are going to make them better. Give them a hug or express some affection. Do not cry in front of your children. They need your emotional support. You influence them. Tell your child to pack their favorite things to bring to the doctors office. explain that they are not moving but they have to stay there for awhile. Also explain that the hospital is a safe place. Engage in this activity with your child. Bring lots of entertainment!! The hospital gets boring because you can only watch TV for so long. Also be prepared. Go hat shopping with your child but do not tell your child they are going to lose their hair. This does not pertain to you if your child is not doing radiation treatment!! This will make your child's diagnoses way easier!!!

Rockstar Ronan

Ronan Sean Thompson was born May 12, 2007. He was the little brother to darling twin boys, Liam and Quinn. From the moment Ronan was born, we knew that he was the missing piece to our family puzzle. He completed us. We were amazed and in awe of this spicy little spirit who took over our world. We spent the next 3 years in total bliss, and were so thankful for this little guy who constantly made us laugh and love harder than we had ever done before. Every single day with Ronan was a blessing. 

Our perfect family changed in August of 2010, during our annual trip to my parents' house in Washington State. It was a trip that we had been taking since the birth of Liam and Quinn, and we always took a family photo on this trip. Every year, we used this photo as our Christmas card. That August, while the boys were posing in my parents' cornfield, happy as can be, I noticed that Ronan's eye looked a little "off" or "lazy." When I mentioned it to other family members, they all said they hadn't noticed.

The following day, Liam, Quinn, Ronan and I returned home to Phoenix, and Daddy greeted us. He noticed Ronan's eye almost immediately. That's when I knew I should schedule an appointment with Ronan's pediatrician.

Ronan's great pediatrician, Dr. Lindsey Campbell, referred us to an ophthalmologist who dismissed my concerns and intuition. She did not believe there was anything wrong with my baby. But I did. Not long after our meeting started, I walked out of the appointment, and frantically started calling other doctors who might be available to see Ronan on short notice.

Dr. Brendan Cassidy agreed to see Ronan the next day. At first glance at Ronan's eye, which was now bulging out of the socket, Dr. Cassidy immediately knew something was seriously wrong. Dr. Cassidy sent us directly to Phoenix Children's Hospital for an MRI. The MRI showed a small mass above the left orbit of Ronan's eye. The following day, Ronan had a CT scan done, and they found a mass in Ronan's abdomen.

It was on this day, the 12th day of August, 2010, that Ronan, my son, my baby, my love, was diagnosed with Stage IV Neuroblastoma.

Ronan's orbital tumor was successfully removed at Phoenix Children's Hospital on August 13, 2010, where he also received 5 rounds cycles of chemo. The tumor in his abdomen was almost completely removed by surgeons at Sloan-Kettering in New York City. Ronan responded well to the first 5 rounds of chemo, and it was only after the MIBG scan after Round 5, that we decided to forgo the standard COG protocol, the standard treatment for neuroblastoma. We moved Ronan to Sloan Kettering to continue treatment under the care of Dr. Kushner. We did this because Ronan's scans were much improved, but he still had a lot of MIBG activity. We felt Sloan Kettering was where we needed to be. Ronan underwent radiation and ICE at Sloan. A few weeks later, Ronan's disease took a turn for the worse. His body did not respond to the chemo, and his disease rapidly progressed. We returned to Phoenix with heavy hearts, but refused to give up.

We took Ronan to meet with Dr. Mosse at CHOP in Philadelphia. It was at CHOP that we were told that Ronan could not undergo MIBG therapy. We were told to take Ronan home, and enjoy the rest of the time we had with him.

We searched frantically for something, anything else that would help our baby. We were told to contact Dr. Giselle Sholler and she agreed to accept Ronan in her Nifurtimox trial. But Ronan's little body gave out before we could get to San Diego for the treatment.

Ronan's battle with Neuroblastoma ended on May 9, 2011, but his fight will go on. Ronan continues to inspire us in the way he lived his life full of passion, strength, and courage. He will live forever in our hearts and minds as the most beautiful little boy to ever have touched the earth. We, as a family, are determined to carry on his name, and find a cure for this horrible disease.

Maya Thompson

Credit to http://www.theronanthompsonfoundation.com/about/ronan

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