Cameron's Fight against ATRT Cancer
This is our son Cameron. He is a spunky, fun-loving, chocolate milk drinking little man.
Shortly after his second birthday Cameron started getting sick. It was the beginning of February 2015 and one night right before bed Cameron vomited all over. It was a lot. We thought maybe he was coming down with something and kept an extra eye on him through the night.
Everything went okay and we decided it maybe was a one time incident. But then it happened again. We called the Doctor's office and spoke to a triage nurse who suggested something was going around and to keep an eye on him and keep fluids going. All the stuff you know you're going to hear but you call anyway. I called in family sick time at work. Honestly Cameron was behaving normally. No temperature. Just vomiting at a random time. It would happen in the morning, in the afternoon, in the evening and even in the middle of the night. There didn't seem to be a reason. We tried eliminating foods and called the Doctor's office. Visited the Doctor's office. They suggested it was allergies which causes drainage into the tummy and might make him throw up. At this point it was still only usually once a day. So we tried Children's Benedryl. No dice. Changed it to Children's Zyrtec. Nope. We were visiting the doctor's office about once a week it seemed.
We mentioned to the Doctor's office that Cameron had fallen down stairs at the end of January. (When it happened we called the Doctor's office but everything with him was fine). They didn't think this was the cause.
After about a month of this the vomiting starting to be more like twice a day Cameron was prescribed medicine for reflux. He sure did hate that stuff. But we kept giving it to him. We were supposed to do that for a week and call back.
The following week with no change we did call. We were upset and wanted more. This kiddo has been throwing up for many weeks!!! We asked about taking Cameron to a GI doctor. We asked about the fall down the stairs again. To boot my husband noticed a large lump under Cameron's arm. They changed the reflux medicine and had us come in to look at the lump. We thought maybe it was a lymph node. The doctor wasn't positive and set an appointment for the following week with a surgeon to look at it. Meanwhile Cameron's vomiting was greatly increasing, he wasn't keeping anything down. We were getting angry and worried. Cameron now was not his happy self. He didn't want to do much but also was very irritable. Daycare even started saying something. Family was noticing. Cameron was miserable. Throwing up was our new norm.
I suggested the GI doctor again. The doctor's office wanted to be less invasive and we went to St Luke's and Cameron had an ultrasound on his abdominal area. They couldn't see a reason for the vomiting.
We waited that week for the appointment with the surgeon. We kept forcing the reflux medicine down Cameron's throat. Things just got worse. Friday April 10th, 2015 my husband and I went to the surgeon. He couldn't quite tell what it was but thought maybe it was a really swollen node. He wanted to wait a month and see if it got bigger or smaller. He even said there was a notation on the doctor's paper that the mother was fixated on all these things being related. He said the arm thing had nothing to do with Cameron throwing up.
That was that.
We were fuming.
It had been 9 weeks now of no answers.
My mom suggested taking him into the ER. I thought about it. My husband's Mom called to see how the appointment with the surgeon. I told her and said I was planning to take Cameron to the ER the following day before work. I had to get going because I had to get to work today. That was the plan.
My husband's Mom called later and said a family friend was the ER doctor working today. She suggested having my husband just take Cameron that day. We wanted to do some eliminating of anything that could be causing all this.
After some shuffling Adam left work early and I left work a few hours to go with him to the ER. I needed to return to work before we actually saw the Doctor. I wasn't at work very long and I was called and told it looked like Cameron had severe hydrocephalus!!!! They wanted Cameron transported to another hospital to get a shunt in place. I left work and got back to the hospital in time to hold Cameron on the ambulance ride to Sanford Children's in Sioux Falls. My husband followed behind.
That night was a long night. The doctor's wanted to do an MRI on Cameron that morning. They came and talked with us and said they saw some spots that looked like fresh blood. They weren't sure and needed a closer look and also for different people to look. They did mention a small chance that they were looking at tumors. Cameron was given an oral steroid and we slept the next few hours.
A closer look revealed Cameron had a big tumor on his brain stem and four smaller tumors. The cause of the hydrocephalus was that big tumor blocking the spinal fluid from draining properly. We were terrified. How does a two year old get brain cancer???
This beginning story is sure getting long. But that's the main back story. We have been at Sanford Children's for 12 days today. Our world has been turned upside down. In those days Cameron has had brain surgery to remove the larger tumor on his brain stem. He has had an exterior ventricular drain put in to remove all that extra fluid causing him SO MUCH PAIN. The "unrelated" lump under his arm was bigger than a golf ball. They did a biopsy of that.
We met with an Oncology team. Never did I think I'd meet with an Oncology team. Cameron's Oncologist sent biopsies of Cameron's tumors to University of Iowa. They seemed stumped that he would have a brain tumor and a tumor outside the brain. That is very rare.
We waited and worked on Cameron getting strong and recovering from his brain surgery. More scans showed Cameron also has little tumors in his spine.
Patholgy came back. It was the blow we didn't want to get.
Both samples came back malignant. Cameron was diagnosed with AT/RT cancer.
An atypical teratoid rhabdoid tumor, often called AT/RT, is a very rare and fast-growing tumor of the central nervous system. AT/RT represents only 1 to 2 percent of childhood brain tumors.
Here's the part we were told that made us want to throw up right away. AT/RT is a very difficult tumor to cure and, unfortunately, the outcomes remain poor. Cure rates for children over 3 are about 70 percent, while cure rates for children younger than 3 remain below 15 percent.
New therapy is being investigated in clinical trials. The goal is to increase the cure rates and improve survival in very young children and in children who have disease that cannot be surgically removed. Our Oncologist contacted St Jude's in Memphis, TN and that is our next step. Sometime next week Cameron will be transported via fixed wing with a medical team. He will be getting a trial medicine in addition to chemotherapy and at some point possibly radiation.
Adam and I aren't sure on how long the therapies will take but we're in it for the long haul. Thankfully we've been blessed with an insanely supportive family and group of friends who have all been with us every single step of the way.
Cameron needs treatment, and fast.
Please help us as we ensure Cameron is given the best chances possible to fight for his life. I promise you this little amazing boy is a fighter!!!
We appreciate everything and we are especially grateful for the prayers and positive thoughts from everybody... You ALL will help Cam win this fight.
Thank you so much!
Adam, Ranelle & Cameron
Today has been the worst day of our lives. I'm sure losing your child and planning their funeral on the same day would be almost everybody's worst day.
We had a lot of decisions to make.
Cameron’s wake will be this Thursday from 4 p.m. until 8 p.m. at Immaculate Conception. Anybody is welcome to attend.
Cameron’s funeral will be Friday at 11:30 a.m. at Immaculate Conception.
Thank you endlessly to every single one of you for all your support, love and generosity. We appreciate everything that everybody has done for Cameron and us the past few months. Everything has helped and is still helping us through this.
We love you.
On Thursday we were given the news that Cameron's MRI results were not what we wanted.
The tumors were responding to the chemotherapy but Dr Broniscier said there are just too many new tumors. He said the other thing we could try is radiation but he didn't recommend it. He said he did not think it would stop the new tumors enough to be beneficial for as sick as it would make Cam.
They told us they would help arrange anything we want to do.
Adam and I decided Cameron would like to come home then. Within a couple hours they had everything arranged and we were flying out of Memphis back home, heads spinning.
Cameron has been a fighter since the day he was born and he still is even now.
I would do anything for this not to be real.
Right now we don't know what to say. We all love Cameron with everything we've got and he's home now, comfortable, with family and friends.
These are a couple quotes from The Fault in Our Stars that I think are put well.
"Some infinities are bigger than other infinities."
"I cannot tell you how thankful I am for our little infinity. I wouldn't trade it for the world. You gave me a forever within the numbered days, and I'm grateful."
So we're back at the St Jude clinic. They needed to start an IV (since his port cannot be used) and 3rd time was the charm. Going inpatient tonight, surgery tomorrow.
We're hoping for a restful night for Cam.
I hope you are all having a great weekend.
We've been busy the past few days so I've not made an update.
Things have been very good overall.
I think I've mentioned Cam having rough nights.... well they weren't getting any better last week. Thursday was our first "day off" from appointments. Thursday morning (early morning) we could tell Cameron's pain was out of control. **It's so awful to stand and watch your baby be in so much pain**
Thankfully the day before we signed up for some services through our Quality of Life team (same people who handle Cam's pain management) for a 24/7 nursing service. We called the 24 hour line and less than an hour Later Cameron's nurse, Terri arrived at the Ronald McDonald house.
That was so much better than taking him to the Med Room at St Jude.
***Back story is that Cameron has a very difficult time riding in his carseat. We believe he won't sit up because of the tumors in his spine. His car seat forces him to sit uplease which causes him to literally scream and cry in pain the short distance to St Jude***
So Terri can see it's definitely pain. The crazy thing is (in addition to the many medicines Cameron is on) he is on a continuous fentanyl drip of 10 mics/hr plus we can parent boost him an additional 25 mics/hr every 20 minutes.
We spent that night boosting him all the time with little relief. We gave him extra ativan. Nada.
Terri wanted to up his basal rate & called the doctor. He said no, let's up the parental boost options to 30 mics every 10 minutes and up his methadone. She was told to boost him until he was finally comfortable.
110 mics later he stopped fussing. Yikes.
So she left & we went back to sleep.
About another hour later he was grinding his teeth and doing some whining and whimpering.
I boosted him quite a bit.
Later in the afternoon we noticed Cameron's shirt was wet. We looked and his port dressings and area are all wet... from the inside.
Crap! We called Terri again. She came back and decided we needed to take the dressings off and have a look. It wasn't returning blood very well, but some was still coming out.
She decided to change the needle and dressings here bedside.
Several hours later we see his shirt is wet again. Hmmm. We called the 24/7 number again. They said somebody can come back out again, we could just wait for our appointment tomorrow or go now and take Cam to the Med Room at St Jude.
We decided to take him to the Med Room.
After taking the dressings off again they think that his port access seems to be okay but maybe that the accessed hole earlier is draining ooze out.
They said he will need an X-ray the next morning.
The night wasn't that great. That morning we had Speech Therapy and Physical Therapy. Both nothing much happened.
A lady came in who specializes in central lines decided Cameron has some pocket of fluids under his skin by the port.
Then we met with the Quality of Life team who went over everything that's been going on. They made the X-ray appointment that would have a dye contrast and deaccessed his port.
We told them he was going to need something for pain management since he would not be getting his fentanyl drip.
We went on for the x-ray and then back up to wait for the results. Finally they came in and said.....
(Insert shocked faces)
Cameron's port is malfunctioning. They said essentially that they've never ran into an issue like this before. Grrr. Serious!!!!
It's SO our story. Lol, very unique situations.
That meant that moat of his pain medication wasn't reaching him, which was why he'd been in pain the past few days. It was collecting in a pocket under his skin and oozing out. Goodness. Some was still getting absorbed but not enough.
Cam can't have the issue get repaired until this coming Wednesday so he has been deaccessed all weekend. That's pretty dang nice! The negative part is that he still requires constant pain management.
The Doc upped his methadone again, upped his steroid and gave us an oral morphine concentrate.
We came back home and shortly learned Mr. Cam still doesn't want anything in his mouth still.
He threw up a couple times. We called and they changed it to dilaudid through his G tube.
All weekend we've been relaxing and taking it easy. I think the med change makes him sleeper because he's not used to it. No smiles the past couple days but definitely walks and cuddles. Cameron is loving all his books being read to him.
This week we will be busy. Tomorrow we have meetings with the Doc's, blood work, therapies and information on the week's plans. We know Cameron will get his MRI on Thursday. He will have to be sedated. He will also have a follow up hearing exam which also requires sedation. We also now know he'll have a surgery.
Hopefully by week's end we will know when Cam will have his 3rd chemotherapy. Now.... if they slow it that's okay. Cameron had what was on paper of 2 months of chemo done in 3 weeks.
We will let you all know what's up.
Thank you very much for your crazy amount of support, love and prayers!!!!!
Hi there, we live in KCMO but seen your story and feel your pain. We took in a 26 yr old gal from our church who also has a brain tumor called AVM (arterial Venus mass). She has seen a great team of neurosurgeons at KU medical Her tumor also in unoperable I just want to tell you to hang in there, be positive to him and positive with yourselfs. Life can take some traumatic ups and downs Keep praying over him and with each other and God will be with you Just never give up hope, stay strong for him, he can sence your every move and emotion so be positive, prayers and blessings to you
My heart breaks for you and your family. Your little guy was a fighter and now he is your very own Angel. God please be with this family at this difficult time. You are all in my prayers... fly high little guy !
Sorry for your loss, i know there are no words to make this better..
Our hearts are broken for you. All our love and prayers to all of you.
This breaks my heart and I will be praying for you and that sweet baby boy! I was born and raised in Sioux City and now live in Memphis. St Jude is an amazing hospital and I pray one day they find a cure for childhood cancer and no child had to suffer ever again! God Bless you all!
No words. My heart breaks for you. Continued prayers of support through this extremely difficult next length of this journey. May God's grace and peace guide you all.
Praying that this chemo does its thing and Cameron tolerates it well! Asking God to give you all His blessings and His mighty strength!
sending prayers for God's strength and healing!
Oh Ranelle and Adam, hang in there. We are praying for you all. Be strong.
God bless you, Cameron! Praying for you to get some relief from the pain and some rest for all of you.
Hoping he has some relief soon!! Prayers!
Prayers are with you and your family. So hope you will get to St.Judes