Dr Eshun called today and it looks as if Jack has to go back on his levothyroxine…a medication to help correct his thyroid levels. We were really hoping that he didn’t have to be on any more meds, but his endocrinologist believes that he will have to be on this for the rest of his life. We start one dosage now and in a month we have to go in and get a blood draw and meet with Dr Olsen to see how it is holding up. He will have to get checks every 6 months for awhile and then probably every year after that.
We have been busy planning the event in March and we feel very lucky to have such great support from so many people who have reached out and donated amazing items. Thank you so much to all of you who are working hard to make this night successful!
We have introduced you to some other Neuroblastoma warriors and we want to talk about another beautiful little boy who was diagnosed with Stage IV Neuroblastoma a few months after Jack…his name is Ronan Thompson. I am sure many of you know who his is not only from what we have said on here, but because there are so many across the country that fell in love with him. We hardly knew Ronan, but he touched our hearts in a huge way. Jack and Ronan were born at the same hospital, one day apart. When I first met his mom, Maya, and learned about this common relation between the boys I thought of this couple we saw in the halls at Scottsdale Shea and wondered if it was her and her husband. I remember walking around the halls before Jack was born and there was another couple there that I have never been able to forget…she too was walking the halls and he was rubbing her back the entire time. For whatever reason, I feel like it could have been then and maybe it wasn’t, but that memory sticks with me.
Jack always knew of Ronan and still talks about him a lot even though they never were able to have the play date that we wanted. The last time we saw Ronan, we were in for scans and saw them in the waiting room while he was getting all of his test for transplant. He was shy with us but he had the cutest little smile under his trademark fedora hat. He would laugh when Zac would tickle Jack and then snuggle in to his moms’ arms. When we were leaving that day Maya was talking with another parent as she was holding Ronan. Ronan looked over her sholder at us and gave us that same sweet smile and added a little wave. Soon after that, the Thompsons left for NY. This family has been through so much and it isn’t fair. It isn’t right that they lost their son to Neuroblastoma. I cannot imagine what they go through on a daily basis and this is just one more reason why we determinded to raise money for NB. We need to help find a cure. Please click the link at the top of the page and buy your ticket…we need your help…
Ronan Sean Thompson was born May 12, 2007 in perfect health. He spent the first three years of his life happy, healthy, and making everyone fall in love with his big blue eyes and pure happy smile.
Our perfect family life changed in August of 2010, during our annual trip to my parent’s house in Washington State. It was a trip that I made religiously since the birth of our now 8 year-old twin boys, Liam and Quinn. Taking a great family photo during our stay was part of the fun, it always became the one we used for our Christmas card. That August, while the boys were posing in the hammock, happy as can be, I noticed that Ronan’s eye looked a little “off” or “lazy”. But when I mentioned it to other family members, they all said they hadn’t noticed.
The following day, Liam, Quinn, Ronan and I all returned home to Arizona where Daddy greeted us. He noticed Ronan’s eye almost immediately without me saying a word. That’s when I knew I should schedule an appointment with the Pediatrician.
After the Pediatrician looked at Ronan’s eye, he referred us to an ophthalmologist who won my antipathy by dismissing my concerns and intuition. He did not believe there was anything wrong with my baby. I did. Not long after our meeting started, I found myself walking out of the appointment and frantically calling other doctors who would be available to see Ronan on short notice. Dr. Brendan Cassidy agreed to see Ronan the next day and upon first glance at Ronan’s eye, which now appeared to be bulging out of the socket, he knew immediately there was something 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 that is when they found the 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 his MIBG scan after Round 5, that we decided to forgo the standard COG protocol and move him to Sloan Kettering under the care of Dr. Kushner. We did this because although Ronan’s scans came back much improved…. he still had a lot of MIBG activity. We felt Sloan Kettering was where we needed to be. We did radiation and ICE at Sloan and a few weeks later, Ronan’s disease took a turn for the worst as he had no response to the chemo at all and his disease rapidly progressed. We returned back to Phoenix with heavy hearts, refusing to give up. We flew Ronan out to meet with Dr. Mosse at CHOP and it was there that we were told Ronan could not do the MIBG therapy, that we should take him home to enjoy the rest of the time we had with him. Frantically, we searched for something else for our baby. We were told to contact Dr. Giselle Sholler and she agreed to take Ronan on and we were due to start her Nifurtimox trail but Ronan’s little body gave out before we could get him to San Diego for treatment.
Ronan’s battle with Neuroblastoma ended on May 9, 2011 but his fight continues on. He continues to inspire us all in the way he lived his life full of passion, strength, and courage. He will forever live 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 help find a cure for this horrible disease.
Ronan’s family started The Ronan Thompson Foundation and will continue to fight to help make a difference in the world of childhood cancer