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