It obviously has been a while since we have posted to the blog. Most of your are aware of the reason why but for those that we don’t talk to often or have gotten mixed stories I thought it would be appropriate to bring you up to date. For privacy I will leave out certain specifics about medical conditions, just give us a call if you have any questions. We like to hear from people too! Sorry if it’s a bit long.
On Dec 8th we started the evening by attending our church Christmas party at around 6pm. We had got there early because Dawnelle had been asked to help serve food. Consequently I had all three kids at the table with me. Bryson had brought a tennis ball to play without asking or else I probably would have said no. But I didn’t prevent him from playing with it because it did keep him occupied and even the High Priest Leader started playing with him as well.
Right before we started to eat Bryson came back to the table after playing and said he had fell on the tennis ball and was crying very loud. I told him that he needed to be quite because we were just about to bless the food. Repeated requests failed and he kept crying. Usually I would just have taken him to another room to let him scream but for some reason I decided to take him home and leave the girls to friends at the table to worry about.
When we got home he didn’t want to walk, so I carried him into our bed where he could watch TV and hopefully think about something else then pain. He started making attempts to throw up an empty stomach and got very pale. So I called Dawnelle’s Aunt who lives 5 minutes away and is also a nurse at the IHC hospital here. On the way over he stopped crying, got even paler and started falling asleep. He lay on the couch while Dawnelle’s Aunt looked over him and found that the area he was complaining about there was nothing there to really be concerned about. Since it was not a head trauma she was not worried about him falling asleep.
I took him home and let him sleep. He woke up in the middle of the night for 2 hours in pain and we decided we would go see the pediatrician in the morning. But when he woke up at 7am he seemed to be much better (isn’t that how it always works). Usually I have a hard time going to see the doctor but this time Dawnelle was right that we still needed to go.
The pediatrician checked for the appendicitis of course which was a negative, but he found that he was really guarding the area that he had landed on the tennis ball. After calling Primary Children’s Medical Center (PCMC) they suggested we come down for a CT scan. Carley was in school and we had our 10 month old, Maddy with us.
We drove 60 minutes to PCMC and checked into the ER. The first thing they did was X-Ray Bryson which they came back and said that they still were not sure what was causing the pain. They suggested a CT scan to which I consented to an Ultra Sound. The Ultra Sound went well and they came back and said that they are concerned and need to do a better image to which I consented to a CT scan. Bryson had to drink about 6 cups of punch like fluid. When he got to the 5th cup he threw quite a bit of it up and was pretty upset. They took him into the CT scan anyway where I was able to stay with him.
About 45 minutes after the CT scan the ER doctor came in to the small room that we were in and delivered the news that made that day the worst day of my life. They had found a mass and were not sure what it was. I can’t tell you what that felt like to have that message spoken to you, but I am sure some of your have had similar events in your life.
Thankfully my Aunt drove up and picked up our 10 month old as it was very difficult to keep her occupied and deal with the terrible news. They told us we would be talking to other doctors and Bryson would most likely be admitted to the hospital.
Our cell phones ran out of batteries after 20 minutes of finding out about Bryson and there was no long distance calling at the hospital.
They told us Bryson would be going into surgery that night to remove the mass. It ended up that the Chief of Surgery at PCMC took our case and actually did a laparoscopic biopsy the next after noon. They surgery went well and Bryson did awesome. They said they could not immediately tell what they were dealing with and said it would take some time to get the information back. 7 Days in the hospital and the answer came back. They don’t know. But they were sending things everywhere and had some ideas.
At that time they suggested that we go in and completely remove it and have a better chance at finding out more information, but that they would do it after Christmas and new years. Our plans to go to Denver were a no go and we had Christmas morning on a webcam with the grandparents in Denver.
After new years we returned to PCMC and Bryson got an MRI and underwent the very invasive 4 hour surgery. Afterwards he was in the PICU for 2 days and then at the hospital for 5 more days. He seemed to recover well after which the doctor came and talked to us again about what they had found out. She said they had determined that it was a very rare form of Pancreatic Cancer rare in Adults and even extremely rare in Children. She suggested that they go back in and remove 70 percent of his pancreas etc for less chance of reoccurrence.
A few days later Bryson went in for his 3rd surgery. It was very similar to his previous surgery for initial recovery. After 7 days Bryson went home but this time with a few tubes still in him. At first he went to school and things started to get normal again. 3 days after school he was bleeding from one of his tubes and running a fever. Dawnelle took him to the ER at PCMC where they did tests but could not figure out what was causing the fever.
Two weeks later he still has on and off fevers with another CT scan and a PET CT scan. He doesn’t sleep more then a couple hours before waking in pain. It is ironic but Maddy just started sleeping through the night well. Yesterday they removed the two tubes from him and we hope that helps quickly with the pain and fever. Those hopes changed as he reached a fever of 104 and we took him to the ER yesterday. He was admitted and placed on antibiotics, but they still have not found the cause of the infection. He will be in the hospital for a couple more days.
We have been speaking with the Pediatric Oncologist and they do not have a good suggested plan for treatment. The PET CT scan has come back almost completely negative for any current tumors but it is really too early to tell. His case in adults is so rare that they don’t have very good studies that suggest any form of Chemo is successful, and in children it is almost unheard of, plus the fact that they are not sure if there is anything to treat at this point. So the good news is that there is no Chemo (as of today). The bad news is there is no good chemo treatment.
Here is a little information about Pancreatic cancer. There are 3 different types that have different diagnoses’; Bryson’s is the most rare. Pancreatic cancer is the 4th largest killer but only represents 2 percent of total cancer occurrences.
Here are some articles if your still interested in reading more….
I couldn’t finish this with out saying thank you to the friends and family who have helped during this ordeal. Dawnelle's mom spent 40 days at our house with Carley and Maddy and making numerous trips to and from Salt Lake with the girls to visit Bryson. If there is one thing I suggest is that if you ever come across someone who has had something terrible happen to them, don’t ask what to do, just figure it out and do it. It takes someone special to go beyond asking what they can do to help and just do something. From clearing snow while we have spent nearly 2 ¼ months in the hospital. To food that has been brought over, and watching our children. It has been tough but it would have been 1000 times harder with out good people around us. Thank you for all the thoughts and prayers offered.
Bryson after his first surgery
Bryson's favorite visitor. He always smiles when Maddy comes. When we ask if he wants anything from home to bring to the hospital he always asks if Maddy can come and visit
Bryson has had some special visitors. Andrew George (a BYU football player who caught the game winning touchdown against University of Utah this year) came to visit and brought Bryson some special gifts. Bryson was all smiles with his presents
He also had darth vader come and visit. He is a big star wars fan and we had many star wars marathons at the hospital.
In the past two months while all of this has been happening Carley celebrated her 4th birthday and Maddy started to crawl. She also went from 2 teeth to 10!! The girls have also been troopers. We love all three of them!!
Carley's cinderella cake made by Aunt Sarah