Help Nolan Fight the Battle
Donation protected
Nolan is battling Rhabdomyosarcoma Cancer.
The Beginning of Our Journey...
By Jonathan & Ruth Scully
Our son Nolan is very ill. Around the last week in September/first week of October, he came down with a stuffy nose. No big deal right? Throughout the month of October his nose got worst. He started snoring and it was hard to breathe during the night. So we were told he had a severe sinus infection and was put on 2 different antibiotics, humidifier, steam, saline spray….but nothing made it better. So we got an emergency appointment with an Ear, Nose and Throat Specialist and said that his adenoids were swollen and needed to come out. So on Friday, November 6th, Nolan had surgery to have his tonsils and adenoids out.
After his surgery, he still was not feeling well. We went back for a follow up with his Ear, Nose and Throat Surgeon this past Monday (November 16th) and that’s when we were told that his Adenoid tissue came back positive for Rhabdomyosarcoma, a rather rare soft tissue cancer. That moment, our lives changed forever. We were immediately taken from the ENT’s office in Leonardtown and scheduled to be seen at Georgetown Hospital 3 hours later in the Pediatric Cancer Clinic. By 1100am, we were in the clinic and they were standing there waiting for us.
Since Monday, things have happened so fast it’s almost unbelievable. They scheduled Nolan for his PET Scan/CTs the very next day on Tuesday, November 17th, and his bone scan for Wednesday November 18th, with the hope of being able to surgically position a Chemo port once his testing was complete on Friday. In a child these types of tests are hard to do without them being sedated (and we all know our Nolan!). When we arrived at the hospital on Tuesday morning, they found that he had an obstruction in his nasal airway (probably the tumor itself), which made them uncomfortable about sedating him. So we were admitted to the Pediatric Oncology floor so he would be put under general anesthesia for all the procedures in an “in-patient” setting. They were able to get Operating Room time for Wednesday to actually put in his chemo port, so they went ahead and did that. The only catch was in an attempt to not have to intubate him multiple times, the hospital staff felt that it was much safer to just keep him “under” with a breathing tube for a couple days in order to not have to put a breathing tube in him multiple times. So Wednesday, the surgeon put him under and positioned his port. He said it went well and there was minimal bleeding.
We can tell you that one of the most hardest, most terrifying things we've ever had to experience was seeing our beautiful baby hooked up to a ventilator machine.
So today Nolan had all of his “tests” done. He was first taken down for his Bone Scan this morning, and great news they did not see the cancer in his bones at all! But as we all know, Nolan is a fighter! He kept pulling through all the medications and actually bit his breathing tube so hard it put a kink in it and then ended up having to pull it out and put another one back in a few times (so much for not putting it in and taking it out once!) He’s now on some steroids to help with any inflammation that may have occurred during the removal and replacement of the breathing tubes. They found out quickly that Nolan needs a LITTLE more medicine then your typical little boy! In the process though it looks like his left lung collapsed a little bit through all of that mess, but things seem to be looking good now and they were able to inflate it again!
Good news is that Georgetown Hospital Pediatric Oncology Department is amazing! Nolan gets his own little “Team” of care providers and they have treated him like a King! We are very lucky to have the support and knowledge of the staff at Georgetown! The doctors are so focused on him and analyze every step of the way for the best possible route for him.
From speaking to Nolan's Team of doctors yesterday, we are in for a very long journey. Nolan was not able to be taken off of the ventilator yesterday. They ordered a Brain MRI later in the day which he would've had to of been sedated for, so they decided to keep him intubated for another night.
They were finally able to remove his breathing tube and woke him up Saturday. That made 4 days.
The preliminary outlook is 43 weeks of chemo and 5.5 weeks of radiation (Monday through Friday). They said that his tumor is isolated to his nasal pharnex, which is right through your nose and right above where your throat is. However, they did see traces of it in his lymph nodes. They described his tumor as being not HUGE, but not small. I couldn't bring myself to look at the imagining of it.
An MRI was done of his brain to make sure they know where everything is located and to assist with his "mask fitting" for his radiation treatment. Unfortunately, the radiation that they are suggesting is located in Children's Hospital in Philadelphia, PA. Radiation will run for 5.5 weeks, 5 days a week. He could get his radiation done here in Georgetown but the one in Philadelphia is a more "localized" radiation and doesn't go so wide spread through his face. Since he's a little guy and has alot of growing left to do, they are suggesting this type (Proton Beam) to lessen the effects on the good tissues that are left in his head. There are so many decisions that need to be made so quickly.....and Philadelphia? Yikes. There are so many things that we need to take in account for.....like new baby coming right when radiation starts!
His chemo will be weekly and be able to be done in the out patient clinic here at Georgetown every Monday and his blood work drawn every Thursday (hopefully in St. Mary's). Every three weeks he will be admitted to Georgetown to go through all of the chemo medicines and monitoring to make sure his tolerance and blood levels are good. During the 5.5 weeks of radiation at Children's Hospital of Philadelphia, it looks like we will have to find a place to stay, and of course a lot of commuting.
He began his first chemo treatment yesterday and it was very rough on his little body. He was very ill the whole day and night. The hardest thing in the world for a parent is to see your child suffer and you aren't able to do a thing about it.
Please consider donating to help Nolan fight the battle. Donations will be used for incurred medical expenses, travel, lodging and additional expenses throughout Nolan's journey.
The Beginning of Our Journey...
By Jonathan & Ruth Scully
Our son Nolan is very ill. Around the last week in September/first week of October, he came down with a stuffy nose. No big deal right? Throughout the month of October his nose got worst. He started snoring and it was hard to breathe during the night. So we were told he had a severe sinus infection and was put on 2 different antibiotics, humidifier, steam, saline spray….but nothing made it better. So we got an emergency appointment with an Ear, Nose and Throat Specialist and said that his adenoids were swollen and needed to come out. So on Friday, November 6th, Nolan had surgery to have his tonsils and adenoids out.
After his surgery, he still was not feeling well. We went back for a follow up with his Ear, Nose and Throat Surgeon this past Monday (November 16th) and that’s when we were told that his Adenoid tissue came back positive for Rhabdomyosarcoma, a rather rare soft tissue cancer. That moment, our lives changed forever. We were immediately taken from the ENT’s office in Leonardtown and scheduled to be seen at Georgetown Hospital 3 hours later in the Pediatric Cancer Clinic. By 1100am, we were in the clinic and they were standing there waiting for us.
Since Monday, things have happened so fast it’s almost unbelievable. They scheduled Nolan for his PET Scan/CTs the very next day on Tuesday, November 17th, and his bone scan for Wednesday November 18th, with the hope of being able to surgically position a Chemo port once his testing was complete on Friday. In a child these types of tests are hard to do without them being sedated (and we all know our Nolan!). When we arrived at the hospital on Tuesday morning, they found that he had an obstruction in his nasal airway (probably the tumor itself), which made them uncomfortable about sedating him. So we were admitted to the Pediatric Oncology floor so he would be put under general anesthesia for all the procedures in an “in-patient” setting. They were able to get Operating Room time for Wednesday to actually put in his chemo port, so they went ahead and did that. The only catch was in an attempt to not have to intubate him multiple times, the hospital staff felt that it was much safer to just keep him “under” with a breathing tube for a couple days in order to not have to put a breathing tube in him multiple times. So Wednesday, the surgeon put him under and positioned his port. He said it went well and there was minimal bleeding.
We can tell you that one of the most hardest, most terrifying things we've ever had to experience was seeing our beautiful baby hooked up to a ventilator machine.
So today Nolan had all of his “tests” done. He was first taken down for his Bone Scan this morning, and great news they did not see the cancer in his bones at all! But as we all know, Nolan is a fighter! He kept pulling through all the medications and actually bit his breathing tube so hard it put a kink in it and then ended up having to pull it out and put another one back in a few times (so much for not putting it in and taking it out once!) He’s now on some steroids to help with any inflammation that may have occurred during the removal and replacement of the breathing tubes. They found out quickly that Nolan needs a LITTLE more medicine then your typical little boy! In the process though it looks like his left lung collapsed a little bit through all of that mess, but things seem to be looking good now and they were able to inflate it again!
Good news is that Georgetown Hospital Pediatric Oncology Department is amazing! Nolan gets his own little “Team” of care providers and they have treated him like a King! We are very lucky to have the support and knowledge of the staff at Georgetown! The doctors are so focused on him and analyze every step of the way for the best possible route for him.
From speaking to Nolan's Team of doctors yesterday, we are in for a very long journey. Nolan was not able to be taken off of the ventilator yesterday. They ordered a Brain MRI later in the day which he would've had to of been sedated for, so they decided to keep him intubated for another night.
They were finally able to remove his breathing tube and woke him up Saturday. That made 4 days.
The preliminary outlook is 43 weeks of chemo and 5.5 weeks of radiation (Monday through Friday). They said that his tumor is isolated to his nasal pharnex, which is right through your nose and right above where your throat is. However, they did see traces of it in his lymph nodes. They described his tumor as being not HUGE, but not small. I couldn't bring myself to look at the imagining of it.
An MRI was done of his brain to make sure they know where everything is located and to assist with his "mask fitting" for his radiation treatment. Unfortunately, the radiation that they are suggesting is located in Children's Hospital in Philadelphia, PA. Radiation will run for 5.5 weeks, 5 days a week. He could get his radiation done here in Georgetown but the one in Philadelphia is a more "localized" radiation and doesn't go so wide spread through his face. Since he's a little guy and has alot of growing left to do, they are suggesting this type (Proton Beam) to lessen the effects on the good tissues that are left in his head. There are so many decisions that need to be made so quickly.....and Philadelphia? Yikes. There are so many things that we need to take in account for.....like new baby coming right when radiation starts!
His chemo will be weekly and be able to be done in the out patient clinic here at Georgetown every Monday and his blood work drawn every Thursday (hopefully in St. Mary's). Every three weeks he will be admitted to Georgetown to go through all of the chemo medicines and monitoring to make sure his tolerance and blood levels are good. During the 5.5 weeks of radiation at Children's Hospital of Philadelphia, it looks like we will have to find a place to stay, and of course a lot of commuting.
He began his first chemo treatment yesterday and it was very rough on his little body. He was very ill the whole day and night. The hardest thing in the world for a parent is to see your child suffer and you aren't able to do a thing about it.
Please consider donating to help Nolan fight the battle. Donations will be used for incurred medical expenses, travel, lodging and additional expenses throughout Nolan's journey.
Organizer
Jonathan Scully
Organizer
Leonardtown, MD
