Help Nolan Fight the Battle

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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 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.
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November 29 2016

Good morning all of Nolan's "Friends"!

First, the support that you all have shown Nolan is nothing short of amazing!! You all are what keeps us and Nolan going. Anyone who thinks there is no good left in the world, take a look at this page and all the love that's here. The world IS full of loving people ❤️

However, we received further information yesterday regarding Nolan's PET scan results from last week. With a heart broken into a million pieces, I want you all to know that his Cancer (Rhabdomyosarcoma) not only mutated characteristically into a more aggressive form (Alveolar) but it has also spread into his lungs. So what does this mean?

This week we will finish Chemotherapy and Radiation, and then once his body recovers, the week of Christmas Nolan will go through yet ANOTHER extensive surgery to remove the tumors that spread into his lungs. The recovery from this surgery is not an easy one, as there are 7 rather large lesions between both lungs.

As a family we are trying to swallow this new information and accept it, but it's difficult. Nolan has fought so hard and been so brave, knowing what he's up against now not only makes me sick to my stomach, but angry. So very angry.

For those of you that don't personally know Nolan, he's one of a kind. He's full of smiles, laughs, love, hugs and kisses! Everyone is his friend and he brings so much joy to anyone that meets him. I'm so incredibly lucky God selected me to be his Mommy!!

He deserves better than this.

I've had numerous requests for a place to send Christmas cards to him. He loves to get mail! His life dream is to be a Policeman (he was swore in as a REAL Philadelphia Policeman last year by the wonderful Police Commissioner), his favorite color is Red, he loves dinosaurs and Paw Patrol. He has a big sister and little brother who he adores!!

If you would like to send Nolan a smile, please use:

Nolan Scully
PO Box 2443
Leonardtown, MD 20650

Thank you all for walking thru this nightmare with us. We are forever grateful for each of you!! ❤️
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November 1 2016

Surprise!! My handsome little Frankenstein is home!!!

Nolan once again blew thru expectations of this major surgery! He asked to sit up right after they pulled his breathing out last Tuesday! This kid is nothing short of amazing and quite determined!

His drainage came back negative for spinal fluid and his pulse and blood pressure issues subsided for the most part.

After his procedure yesterday, they told us he was healing well and if I was comfortable with managing his pain, he could go home...and by that time we were ALL ready for Mommy and Nolan to come home!

Nolan does have a massive incision with dissolvable stitches on half of the diameter of his head. They used muscles (or flaps) to graft areas that had to be drilled completely thru, like the bone covering his carotid artery and the roof of his mouth. This is where the majority of Nolan's pain comes from, but today he woke up ALOT better than he has!

Oh speaking of sleeping...NO MORE OXYGEN!!! He is breathing thru his nose perfectly!

Shockingly the part that has Nolan the most upset is that once the packing was removed he acquired a severe speech impediment. It's very hard to understand him. The skin that was grafted onto the hole in his pallette needs to heal and gain strength so hopefully it will resolve itself. But if not, that's ok too! Small potatoes in the grand scheme of things!

Also due to the Cancer invading his pallette so bad, his sensory nerves were severed so he is unable to feel the roof of his mouth. We have to be careful with hot foods because he will not be able to feel any burning sensation.

He's resting very comfortably today watching his tablet. He's in much better spirits! I believe the next course of action will be additional radiation sessions. He has to heal from this surgery first before any additional treatments begin again. Radiation will probably be followed by the aggressive chemotherapy protocol beginning again.

The pathology report came back from his surgery on Saturday. From 37 biopsies sent in, only 15 came back positive for active tumor, so they were able to resect alot of the cells along with the tumor!

So fingers crossed, prayers...and maybe luck is still needed! Only time will tell unfortunately

But for now we are home and all together...for that I'm incredibly thankful!!!
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October 27 2016


Hi everyone!! We are now Day 3 Post OP. Today was a better day! Nolan is still in pain, but I'm able to space his pain medication further apart each day. He's still trying to figure out how to eat with his pallette completely numb, but he's doing better! And he took a long walk today! He walked around the whole floor!! This boy is nothing short of amazing!! We will however be here for another week or two

We also have a few hiccups this evening... Nolan began to have some nasal drainage. So they are testing the fluid to make sure that it is not spinal fluid leaking from the surgery. He's also struggling with low heart rate and high blood pressure tonight. So we are waiting to see what happens with these things. Still very scary and nerve racking.

I wanted to post the happy pictures, but also the very real ones. This is the reality that our family has to look at. To say this is terrifying is an understatement and it's FAR from over. I'm tired of watching my son look like this and fight so very hard every single day...This is childhood Cancer. This is what your child looks like after surgeons have been cutting inside their head for 13 hours.

However, we have made a new "family" up here!! The DCFD men and women who Nolan met Sunday, came up here this evening and brought us a home cooked meal!! What wonderful people...they will never know how much it means to us. They bought Nolan a coloring book and he took his crayon and "wrote" - I Love You Guys

Again our friends, family and Community are beyond amazing! You all have helped us in so many ways, even if it was just a comment on Facebook, text message by phone or a card in the mail! We truly love you all! Please continue to pray for Nolan. This immediate hurdle is not yet over...
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October 25 2016

Quick update on Nolan...

He was able to be extubated (after begging him not to bite the breathing tube in half all night) at around 8:30am. Like always he fought thru the sedation and kept the nurses on their toes!

He was transported downstairs for a CT scan around 5:30am to check for any excessive bleeding or post operative problems and none were seen! He did need a blood transfusion this morning but with all the operation and fluids that was to be expected.

Nolan is VERY swollen and it's hard to open his eyes and he is in ALOT of pain. He's currently on morphine and nausea medication.

So we have a long ways to go. This is only day one. In about 5 days he will be back in the OR to remove all the packing throughout his head and to get an updated MRI.

Thank you all for your prayers, they really pulled us all through yesterday!!
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Created November 22, 2015
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