Childhood Cancer Awareness Month

Be like the bird that, passing on her flight awhile on boughs too slight, feels them give way beneath her, and yet sings, knowing that she hath wings. ~Victor Hugo

September is Childhood Cancer Awareness Month. Each and every day approximately 46 children are diagnosed with cancer. We became one of those 46........ 

On August 5th, 2010, our family was shocked to learn that Trace, our 11yr old son, who had had surgery a week before to remove a cyst from his neck, was now fighting for his life against an extremely rare salivary cancer. Our world has been turned upside down and is still spinning out of control. We are headed to MD Anderson in Texas later this week to meet our surgeon, have tests done and schedule the surgery. The name of this cancer is Cystic Mucoepidermoid Carcinoma of the Parotid Gland. What a mouthful!! Please keep him and our family in your prayers as we begin this journey. We need all you can give. 

Head over to these great blogs for more Wordful or Wordless Wednesdays!!

Hurdles and the Finish Line

August 24, 2010

The last week has been a whirlwind of phone calls, quick runs to hospital and post office and research.

We made the decision to refer to MD Anderson on August 15th. I found out we could do it on our own, so I called and got the balls rolling on the 16th. Spoke to a very nice woman and she told me she needed the pathology results faxed over for them to look at and set up an appointment. They were not sure if we would see a pediatric surgeon or an adult surgeon as this type of cancer occurs most frequently in adults. I called our local surgeon's office to request that they fax over the path results.

I called MD Anderson around noon on August 17th to see if they had received the fax from the surgeon and they said no. I was totally confused, angry and could not believe that a doctor's office would not do this promptly. UGH!!

I told her I had a copy of it and that I would write a brief history on the back and fax it to her myself. She then told me that they would also need the CD of the ultrasound, pathology slides and all records. I run to the nearest city to fax the results I had. As soon as I got back I called the hospital to request the pathology slides be sent and they said they would be shipped out overnight to MD Anderson...yay Path Dept. I then called radiology and requested a CD of the ultrasound to mail...which I was told to do.  They said to give them an hour and it would be ready. Stewart waited an hour, then headed to the hospital to pick up the CD and get it in the mail before they closed. Our local postmaster waited there at the post office after hours so he could get it mailed out for us.

We called the surgeon's office again and requested they send Trace's records ASAP. Also called the pedi's office and they faxed them immediately....and even called to let me know they had.

On August 18 we called MD Anderson again to see if they had recieved Trace's records from the surgeon. I was SHOCKED to hear that they had NOT!! Stewart then called the office and then he reassured me that they would be faxing them immediately. We waited, they didn't, so he left to go up there. Needless to say...they were faxed.

Later that day MD Anderson called and said they had received the faxed records. YAY! We requested to see Dr. Clayman per Dr. C. recommendation. They said they were working on the case and should have some appointments set up in a few days. They also said we needed to get another CD of the ultrasound to bring with us...that we should have not mailed the 1st one...which we were told to do. Called RRMC Rad. Dept and they were very nice, said they would have another ready for us to just come get it. I don't know if they are supposed to charge for those, but we didn't get asked for money.  

Days passed very very slowly waiting to hear from MD Anderson. We are soooo thankful that his cancer is not emergent, not aggressive, and that we have this time to research and find the best of the best.

Ms. Odom from the Head and Neck Center at MD Anderson calls with Trace's appointments on August 24th!! YAY!!

We are to see Dr. Stephen Lai on Sept 2nd.

We need to be there at 12:30 for appointment at 1:30.

We need to be prepared to stay for 3-5 days for tests and scans.

Trace will have labs and scans over a few days.

They gave us the number for Travel services to help set up hotel rooms and gave us Trace's medical discount code.

YAY!! We have an appointment....at one of the best cancer hospitals in the WORLD!! We will beat this.

ODDS

Each and every school day, 46 children, more than two full classrooms of kids, are diagnosed with cancer in the US alone. More children die each year from pediatric cancer than from asthma,diabetes, cystic fibrosis, congenital abnormalities and AIDS combined.

On August 5, 2010, we unfortunately became part of that statistic. 1 out of 46, 2 out of 100....wow! Our little boy, Trace, was diagnosed with Cystic Mucoepidermoid Carcinoma of the Parotid Gland...a cancer of a salivary gland. Very very rare and extremely rare in a child.

First came the "why us", "why Trace", "haven't we been through enough heartache?", "will we lose another child?".

Then came the anger...and I am still angry. This is so not fair!! I want to stomp my feet, lay on the floor and beat the floor with my fists. I want to have a full out 2 yr old temper tantrum. Will it accomplish anything?? Probably not...but it may make me feel better.

I know this is all part of the grieving process--denial, anger, bargaining, depression and acceptance.

I know I am not grieving the "loss" of my child, but I am grieving the loss of his health, of his childhood, of his freedom to do whatever he wants to do when he wants to do it. He now has to endure lots of doctor visits, tons of needle sticks and tests, surgeries, and an unknown future.

One thing I know for sure, he will have me by his side for every single step of the way to make it as easy as possible.

I wish I could do this for him, take away his fear, his pain, his anxiety.

I wish I could promise it will be alright, wouldn't hurt and will all go away soon.

I wish we had never gotten this ugly diagnosis.

I wish there was no such thing as cancer in a child.

Decisions Decisions

August 15, 2010

Well, I stayed up most of the night reading the forum I had found. I found lots of valuable information to prepare for the appointment today. I did read that his specific type:

Cystic Mucoepidermoid Carcinoma of the Parotid Gland

is a low grade, slow growing type of cancer that is easily treated with surgery, rarely needing radiation.

BUT...

it's still cancer...

in my little boy.

Trace's post-op appointment was the afternoon of the 5th and they brought us right back. We reviewed the pathology report, noting that the tumor resection had incomplete margins, which means that the cancer was cut into increasing the risk of spillage of cancer cells into the surrounding tissue.

The surgeon wanted to let the incision heal before he did a proposed 2nd surgery to remove the entire parotid gland. I asked about the facial nerve involvement and the doctor acted like it wasn't a big deal.

Stewart and I were so inundated with information that I think we were in shock and was just nodding in agreement to everything the doctor said. We scheduled the surgery for Thursday August 25th to remove the entire gland.

After many long nights of reading the forum and the many google results about this cancer and treatment, I am more worried about this facial nerve involvement. The facial nerve that controls the eyebrows, eyelids, nose, lips runs right through the parotid gland, so any manipulation of that nerve could result in droopy lid and mouth.

We talked with his pediatrician for an hour about treatment options, surgical options, hospital options. She suggested either MD Anderson in Houston or St Jude in Memphis and to let her know which we decide and she will get the ball rolling. I know it's not a cancer that requires emergent surgery but I want it out and want it out now!!

WOW--What a birthday!! The 6th was my birthday and 18 yrs ago that week I was making funeral plans for our daughter that was stillborn, today I am making plans to treat my 11 yr old son's cancer. How about we just skip my birthday from now on. 

August 5th--Trace diagnosed with cancer
August 6th--my birthday
August 7th--gave birth to stillborn daughter 18yrs ago
August 8th--Trace has 2 nosebleeds and I have a breakdown
August 9th--Take Trace to pedi for nosebleeds and Kelsi's 17th birthday
WHAT A WEEK!!

The more we thought about the possible complications over the next week, and talking with his pediatrician, and reading as much as we could online, we just didn't feel confident with the recommendations. I found out that there was a local pediatrician whose son had the same type of cancer and got in touch with him. From this discussion and based on his recommendation and talking again with our pediatrician, we decided to go to MD Anderson in Houston, TX for a consult. Will start the ball rolling in am!

The Fight begins...

August 4, 2010

Well...the news was not good.

We waited until noon to call the doctor's office ourselves after they still hadn't called yesterday when we were told they would have the pathology results. They said they were still waiting for the results and that the doctor would call soon. Stewart was mad so he went outside. About 30 minutes later, the doctor called and asked how Trace was doing then started talking...


this is what I heard:

pathology

Mayo Clinic

Johns Hopkins

salivary gland

carcinoma

additional surgery

Stewart walks in while I am on the phone and see's the panic and tears in my eyes and knew it wasn't good news. I finish talking with the doctor and try to remember what all the doctor said. We talk, then tell Trace and his sisters, then went and told each set of grandparents. Hard when you don't have answers to all the questions you are then faced with.

Many many many questions

Once we got back home we hit the computers and started doing research, made a list of questions, trying to prepare for the follow up appointment tomorrow to get the answers we need.

I found an online forum in the middle of the night of people with this specific cancer and the specific procedure he will most likely have to have.

I plan on staying up all night reading it.