Friday, February 24, 2012

Things change

For those of you that know me well, you know that I have never been a fan of "change". I don't like people moving away, I don't like the start of a new job or school year. I like to be comfortable. I like things to be predictable.
Well, the fact of life is that things do change, sometimes it's little things, other times it's not so little.
Last Friday "everything changed" for our family!
I will start where this began, which takes us back to the boys Football season 2011.Tanner and Tristan were on the same team this year because Tanner was able to "Z" down. Chris was an assistant coach for their team. This was so nice for us because we did not have to split up to watch their games and we were able to watch them work together as teammates.
Tanner played Quarterback Position and Tristan as Wide Receiver and running back, together they made some pretty incredible plays. They made it to playoffs and it was a great Herriman Football season. Nearing the end of the season Tristan began to complain about his leg hurting on and off. In November he began to walk with a limp here and there and would occasionally tiptoe on his right foot. He had some aching in his right leg and heel. One night in November Chris and I decided that I should take him to the doctor and have it checked out and x-rayed just to be sure there was not a break.
That night I took Tristan to the Riverton Hospital Instacare. He and I spent the better part of the night waiting for his foot to be examined and x-rayed. Shortly after the x-ray was taken the Doctor came in to share the results with us. She diagnosed Tristan with Severs Disease in his heel. She explained this as basically growing pains and growth plate injury that would go away with time. She showed me some drawings and recommended Tylenol and Motrin as needed. They also gave Tristan a one-size fits all boot to wear on his foot for support on the days that it would hurt.
We return home Tristan was excited to show his brother the boot and they went to bed.
I proceeded to Google Severs disease and read all about the symptoms, causes and felt that this indeed was the cause of Tristan's pain. Limping, aching, some mild pain etc....he was growing rapidly so this made sense and he would "grow out of it"

A few big things happened, The Boys each had a birthday, Tanner turned 11 and Tristan turned 10. Moving into our Home addition, Thanksgiving, Christmas, New Year I was recovering from a Car accident that happened back in September. Throughout these months Tristan began to walk with a heavier limp and we would tell him to walk on his foot (as per Severs disease it was good to walk flat on the foot), give him Tylenol and Motrin as needed.
February 22nd 2012 ~ Parent Teacher conference, Tristan told me that his foot was hurting that day as he was putting his shoes on to go meet with the teachers. He is to a complainer so this was not normal for him to say that it "hurt". I then planned to call a podiatrist or Sports medicine Doctor to have it looked at. Tristan's conference was first, ~math comes naturally, he is above average in most areas, a good friend and peacemaker in his classroom~ It was and amazing report from his teacher and we went to the book fair to pick up a few books before Tanners conference. Tanner's teacher report was similarly amazing! ~He had perfect scores on most spelling and Math assignments, He is very knowledgeable and willing to share his knowledge with the class : ), and his behavior was incredible~! I was so proud of my boys and happy with the report from both teachers.
The following evening (Feb.23) Tristan was in our bedroom while Chris was lifting some weights. While laying on our bed he says to my husband "Dad My foot feels bigger". Chris stops to look at his foot and examine it and sure enough it IS bigger much bigger! I remember Chris calling for me to come upstairs to look at Tristans foot, yes it is very swollen, we ask Tristan several questions "did you twist it did you jump on it wrong does it hurt?" No, No, No.
Next morning (Friday Feb, 24th) I sent Tanner to school and kept Tristan home so I could take him in to have his foot checked out.
After I dropped off Our Carpool, I decided that I did not want to take him back to the Instacare for the facts that you see different doctors and they do not know my son. I called our Pediatrician and they were able to squeeze us in at 3:30 that afternoon. Tristan lye in bed most of the day watching Disney Channel and taking it easy. Tanner came home from school and chose not to go to the Dr. office with us.
Well if you live in Herriman or visit (ever) The roads always seem to be under construction. This day was no different, making it hard to get to Draper with one lane in late afternoon. We arrived about 15 minutes late. The medical assistant took us right back weighed him measured him and put us in a room.
The Pediatrician came in and took a look at Tristan's foot. He did not seem worried but he did want us to go over to Riverton Hospital Primary Childrens for an X-ray before it closed at 5:30. Tristan and I left the office headed back towards Riverton. I kept thinking that his foot was fractured or broken and they would cast it, how would they do that if they were closing and would his Dr. wait for us to go back to the office? We made it to the hospital, they took Tristan back for the x-ray( he know had a severe limp and was refusing to walk on it). He talks so quietly that the tech came to get me to ask what had been going on she said his ankle was big and looked sore What had happened? Nobody believed that "nothing happened". I was able to go back and sit with Tristan as we waited for the radiologist to call our pediatrician with the results.

Get ready...this is when things change. The tech came to get me noting that our Pediatrician was on the phone and needed to talk to me about the results. (Okay his foot is broken, right) Wrong!
Dr.- "Mrs. Chidester?"
Dr.-"The radiologist has determined that your son has a bone infection called Osteomylitis in his heel, These infections take and IV antibiotic to clear up and must be done in the hospital and they take a very long time to clear up"
Dr.-"I will Call Primary Children's Medical Center In SLC and let them know you will be coming tonight, go home get some pajamas and head up to the ER, they will be waiting for you there"
Me -"OK"-(not what I was expecting I was very alarmed to hear this)
I hung up, helped Tristan out to the car and began to call my husband (5 times) with no answer. Tristan and I stopped at Arby's to get a Roast beef sandwich (his favorite) and headed home. I try calling my husband again (no answer), then my Dad, and Sister. I am a little freaked out. What does "a LONG time" mean? How did he get an infection? There was no injury and never a puncture and he had not been otherwise sick.
Finally my husband calls me, He and Tanner had gone to the Rec Center to play Basketball. I told him what the Dr. said and that we would be home in a minute so I would explain in private so that Tristan would not be afraid.
I explained what the Dr. said to my husband, we got ready, took Tanner down to my Parents house where My Dad and Brother Andrew gave Tristan a blessing. I explained to everyone what was going on and Chris Tristan and I headed downtown. I was worried, Chris was worried and we all had questions.
We arrived at PCMC (Primary's) ER at 7:00pm. after some paperwork and explaining we were taken back to and ER room. That is where we sat for 7 1/2 hours. During this time we had several Doctors come in to examine Tristan's foot, each time they would have a short "hmmm" and then go into the hall to talk amongst each other. The Nurse took some blood (It looked like a small tobasco sauce bottle filled with his blood), this was difficult for Tristan, because it "pinched". He was content after they brought in an X-box video game system for him to play. At this point he thought this was an amazing sleepover where they bring you whatever you want...while we WAIT!
So, we wait, and wait, and wait. The Doctors would come in ask several questions look at it and leave us for hours. After awhile we had an Orthopedic Surgeon come in to evaluate the heel, I thought this was odd because the foot was not broken, why was he there? He ordered an MRI for the foot and left us again. He did seem baffled, they all did. Chris was asking "why aren't they doing anything?, Why haven't they started the antibiotics?"
The Dr. on the ER floor came in to go over the blood test results with us. Tristan's blood tests had come back "Normal" meaning there was not and infection in his bone, infact his tests came back better than normal! WHAT? She told us that they wanted to do an MRI and that would not be available until (now 2:00am Saturday) later that afternoon. She recommended we stay the night in the hospital, but another Dr. that had examined him from the upstairs Inpatient Hospital floor said we could go home and come back later that day. Chris was exhausted and wanted to go home, while he went to pull the car around for us to go home the ER nurse came and spoke to me telling me that she wanted us to stay she had arrange for a room in the short term stay and that she strongly recommend we sleep there that night. Tristan wanted to stay (this was still fun for him).
I felt that something was wrong, why would they want us to stay so badly or at all? This was no Hotel. I realized that the Dr's kept asking us questions that did not make sense 2 even asked if we had a history of Bone Cancer, the answer was No but why were they asking repeatedly?
I decided to stay with Tristan for the night, I sent Chris home to sleep, while Tristan and I moved over to room 116 and fell to sleep (after he watched a little TV).

Chris came up the next morning at 11:00am. We had the MRI scheduled for 2:00 that afternoon, but Tristan's nurse, Lance (he was incredible) told us that they were going to try to get us in earlier, so Tristan could not eat or Drink anything. As it urns out they not only could not get us in earlier but at 2:00 Lance came in to tell us that there had been a Trauma in the ER and they were taken to MRI and we would be postponed until about 3:00. I guess this was ok, other than I was worried about the results coming back to late and the Orthopedic team would not go over them with us. Lance told me that they always have a team there and reassured me that they would go over the results with us that night! We waited again, at 3:15 they took Tristan into the MRI that was a long 50 minutes! When he came back to the room he was a little upset, he did not like the MRI because "It was loud" and so, we waited....
"The results are back", the Dr. on 1st floor told us. "The Orthopedic surgeon will be in to go over them with you, I could fumble my way through it but I would him them to do it" and then she leaves. She was nervous. Ok, so was I. I had been reading up on Bone Cancer and sent my husband a link that day. The symptoms were all there, almost exact match to Severs disease.
I wanted to know what this was! Soon the Dr. car back in, "Well it looks like you will be going home tonight, they would like to see you on Tuesday Morning in the Orthopedic Surgeons Clinic to go over the MRI results" Uhmmm NO! I just blurted out "What is it?" Dr.-"Let me pull up the MRI and try to explain it to you the best I can, but I am not very good at reading these" She begins to explain that it is a tumor, she showed us the MRI and tells us "this is all tumor, on a normal MRI this would show up white if it were bone. His is dark in the heel and it is all a tumor, do you have any questions?" Me "Are they testing it for Cancer?" Dr. -"Yes, that is one of the things they will be looking at".
*Wait, No, not ok!*
Well we decided to go home and try to have a normal weekend, because we have to wait until Tuesday for anything official anyway. I will just say that I knew at that moment that my son had Cancer. I was Diagnosing it via Internet all the way home. Chris on the other hand was in what I would call Denial. What parent would't be? It could be a benign tumor. Yes It could be a benign tumor. I then googled the Doctor we were being sent to, Dr. Lor Randall. Orthopedic Surgeon and Director over Sarcomas at Huntsman CANCER institute, World renowned specialist with a very impressive resume.

Tuesday morning Chris went to work and was Going to meet us at Dr. Randall's office. We were both late. It is difficult figuring out how to get to Park at and find anything at PCMC if you are not a regular there. When we arrive, almost 30 min late this time. I was stressed they would not see us, also the clinic waiting room was FULL, with a white board that said there is a 30min wait for 1 DR. and a 2 hr wait for another. Great, we will be waiting all day again. I did not even finish filling out the paperwork when the nurse called us back. They put us into a room where a Resident Dr. Came in and examined the heel, asked all the same questions, History of Arthritis, Bone cancer, asthma, degenerative disease? No. Has he been sick? No. Has he injured it ? NO NO NO NO! Everything is NO.
He left the room and returned with Dr. Randall who pulled the stool up sat in front of Chris and I and began "I am just going to cut to the chase, I am very concerned about this. I think that it is Cancer. We will need to get a bone biopsy on Thursday to determine for sure and I would love to be able to say to you on Thursday forget everything I said Today, but I don't think that is going to happen."
I had read everything about this, everything he said after that made sense because I knew where he as going with this..
I asked several questions, My husband was silent, he left just after after that appt. I later found out he went home to just think and figure this all out.
 Tristan and I went Downstairs for a CT scan of his lungs, then back upstairs to meet with the Oncologist. Dr. Holly Spraker, she talked to me about the different forms of Bone Cancer. Osteosarcoma, Ewing's Sarcoma were the ones they were looking at. It could still be benign (If that were a possibility why am I meeting with the Oncologist?) She explained Chemo to some extent and what they call a Porta cath. It is basically an implanted IV that they place in his chest area under the skin. She said the CT scan looks good, there was one small spot on his lungs but nothing to worry about it was so small and not likely another tumor.
Tristan and I start for home at 4:30pm, another long day. We had Wednesday off to prepare for Surgery Thursday Morning at 8:30. Tanner stayed home from school a few friends came over to hang out. They played Basketball video games and just enjoyed the normal child life for awhile.

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