MD Anderson--Trip #2

We spent the last 2 days in Houston for more appointments at MD Anderson.


On Wednesday we saw a pediatric radiation oncologist, Dr. McAleer. She went over some of the results of all the scans Trace had at his last appointment. All the results, were "good". CT and ultrasound showed very little of the tumor left and they even said it could be some scar tissue from the original surgery. Also, all the lymph nodes look good with no evidence of involvement. At this point and as long as the pathology on the tumor from his next surgery comes back with the same grade, he would NOT need radiation. YAY!!! :))) BUT, if the pathology changes or it has increased in grade to intermediate or high or if any of the lymph nodes are positive with any cancer cells, we would do Proton Therapy Radiation for 5days a week for 6 weeks starting approximately 2-4 wks after surgery.


Thursday we spent the morning at the zoo for some fun time and then headed over to the hospital for an appointment with the surgeon, Dr. Lai. He scheduled the surgery for October 15th. He will do a superficial parotidectomy with possible selective neck dissection--which means he will make an incision starting at the top of his ear in the front, go down and around the ear lobe to the back and curve back down and around to the front along and under the jaw bone. He will remove the top lobe of the parotid gland, check the facial nerve for any tumor involvement and then check all the lymph nodes in his neck, removing them as needed. They will send some of the tumor for a quick pathology, but we will not know the final pathology for a few days, which will then determine the next step of either scans every 3 months or radiation.


Trace will be in the hospital for 1-2 days with a drain and then released, with followup in a week. Both doctors did mention that Trace was the talk of the Tumor Board meeting and that they would follow his case for probably the next 10 yrs due to its' rarity in occurrence and also in children.


Thank you very very much for all your prayers, thoughts, emails, texts, private messages, etc!! They are very much appreciated. Please continue praying for the surgery, his doctors, the pathology results and recovery.


Continue praying for all the children currently fighting cancer as Childhood Cancer Awareness month comes to a close....to some of us, that month is each and every month year after year after year. I have connected with a couple of moms here in Louisiana through facebook whose children are also fighting....9 yr old Dawson in Many who is about to go on his Make a Wish trip and 4 yr old Katie from Monroe who is currently at St. Judes--include these children in your prayers.



Thanks again!! And as Trace says "Cancer Sucks!!" :)

Patience

We have all heard patience is a virtue....humility and kindness I have covered, patience not so much.

As defined by Wikipedia, patience is the state of endurance under difficult circumstances, which can mean persevering in the face of delay or provocation without acting on annoyance/anger in a negative way; or exhibiting forbearance when under strain, especially when faced with longer-term difficulties.

Screw that!! I'm tired of waiting!

Waiting for this doctor appointment, waiting for that one, waiting for test results, waiting for a surgery date, wait, wait, wait.

I am sooooo sooooo grateful that his cancer is not aggressive, not emergent and that we do have this time to search out the best of the best, but I am so ready to get this taken care of.

I want the tumor out and I want it out yesterday.

If he has to have radiation, I want to get started and get it done with.

I want to know that this is gone so we can get back to some sense of normalcy.

I want to not panic and overeact with every complaint.

I want to have never heard the words "Your child has cancer."

Please take a moment to say a prayer for not only Trace, but also for Dawson from Many and Katie from Monroe and their parents. We are supporting each other as we are dealing with our children fighting against a childhood cancer.

Random Thoughts About Cancer

Since Trace's cancer diagnosis, my life has seemed so out of control. That does not sit well with me, I'm used to being the one in control and now I must relinquish that power to lots of doctors in another state. I know we made the right decision to take him to MD Anderson and trust that they will do what is right for my son.

After trying to handle the stress, lack of sleep and constant tummy trouble, I finally resorted to anti-depressants and anxiety pills.

Spending 2 days at MD Anderson this past week was humbling. I always thought of cancer patients as sad and depressed....but they are actually the complete opposite, full of life and smiling. To them, a new patient is a new friend with which they can talk and interact with in the waiting rooms.

Trace was 1 of only 3 children we saw the entire 2 days at the hospital. There were signs everywhere saying that children 12 and under were not allowed in waiting areas or clinic areas....I had to tell multiple people that yes, he is 11, but he is a patient. :(

Enjoyed listening to old men discussing which flavor of the contrast they were having to drink before their tests was better and what they would much rather be eating and drinking. :)

Found Trace a "cancer sucks" button that we put on his large red MD Anderson bag that holds all of his paperwork in a large binder.

Going to the Galleria across town from the hospital at 5pm on a Thursday evening was not the brightest idea, but he wanted to go to the LEGO store and Rainforest Cafe, so that is where we went!! :)

46 children will be diagnosed with cancer today...and tomorrow....and the next day.....

September is Childhood Cancer Awareness Month.

MD Anderson--Trip #1

Trace had his appts at MD Anderson this past week in Houston TX. We had made the decision to go there for treatment after reading and researching the different treatment options for his type of cancer. Since the facial nerve passes through the parotid gland where his cancer is located, we sought out the best surgeon to finish removing the tumor. Thanks to Dr. Clark in Alexandria for his support, advice and recommendations.



We left central Louisiana early Thursday morning, stopping in Lake Charles to eat breakfast with Katie and then headed on to Houston arriving around 11am. The hotel let us check in early so we could get settled in and clean up before the 1st appt at 12:30. We took the shuttle over to the hospital complex and made our way in the front doors. The aura surrounding that place is amazing...the place is absolutely packed with patients from all over the world...all with cancer. It is filled with aquariums and is very calming. The feeling of hope, love and concern is all around you...from the greeters at the door, to security, to volunteers, to the doctors, nurses and staff and even from your fellow patients and families. Everyone is smiling and wants to talk to every one else...to share their story and hear yours too.



I don't want to say we were bombarded with people, but when you check in they give you a business card holder, and we soon found out why...doctors, nurses, P.A., social workers,...everyone handing you their cards so we know just how to contact them if we need. Everyone that came in to the exam room, which if I can remember correctly was 6, sat down on Trace's level and made sure to include him in every single conversation. All waiting rooms and clinic areas had signs that said no child under 12 was allowed...so we had to say multiple times that day that he is 11, BUT he is a patient. Most children are at the Children's Hospital, but since his cancer is so rare and more rare in children, they decided to keep him on the adult side. We only saw 2 other children those 2 days.



Trace saw his doctor and a hoard of other people, we met the social worker and then went for his labs. Stewart handled that part and said Trace got really nervous and upset, but the lab tech was really attentive and distracted him to calm him down. We left the hospital about 5pm and headed to the Galleria for some relaxation and destressing. :) Trace hit up the LEGO store and we ate dinner at the Rainforest Cafe, then headed back to the hotel since we had to be up early for additional tests/scans the next morning.



Friday morning we took the hotel shuttle over to the hospital for a 9am CT scan with and without contrast. Sitting in those large waiting rooms there are very few empty chairs. Old men with their laptops or Kindles, women with their books, magazines and crochet stuff, families being very supportive and just sitting with them. We are called to the back to prepare for the CT with an IV. My little boy sitting in a row of chairs with 8 other men all of whom are discussing which flavor of the contrast they are having to drink is better, whether it be banana, chocolate or berry. Then the discussion switches to what cancer they are fighting, how long and how often they come in for treatments and tests.



We get the IV started with a few tears and wait for the scan. We are called back for the scan and the tech introduced him to the gigantic CT machine and what it was going to do. She then told him how the contrast was going to make him feel. He said "my butt feels warm." :)) The tech then let him look at the scans on the computer and see inside his head. LOL--he said he looked like an alien. We then headed over to the MRI dept for an ultrasound. An ultrasound was added the day before and when I got the new printout of his schedule it said with biopsy. I then got upset because I didn't have time to prepare him for the possibility of that procedure and I know they can be painful. So we get called back for the US and after she is done, I ask if he will need the biopsy. She said she saw 1 lymph node that was enlarged and that she and the doctor was going in the back to look over the US and the CT and decide of he would need to have a biopsy of the node. While they are gone, I try to explain the biopsy and why they might need to do it. Then the doctor comes in and wants to do the US himself and concluded that a biopsy was not necessary right now...that the enlarged node was probably due to the previous surgery from a month ago and they would monitor it...and it might be taken out anyway during the upcoming surgery.



So...we go back on Sept 16th to meet with a Radiation Oncologist to determine if radiation therapy will be necessary. Dr. Lai said he doesn't like to do it on kids and that they will have a meeting to determine whether or not if will be needed for Trace. We go back to see Dr. Lai on the 23rd to review every thing and schedule the surgery. After that, surgery, possible radiation, and scans every 3-6 months for the next 5 yrs.



Thanks to everyone for your prayers, thoughts and concerns. We appreciate them very much.

Mucoepidermoid Carcinoma of the Parotid Gland

Sept  5, 2010

In a nutshell~~

Mucoepidermoid carcinoma of the parotid gland is very rare in children. Clinical stage and histologic grade are the main prognostic factors. Complete excision (superficial or total parotidectomy) with preservation of facial nerve is the treatment of choice. Neck dissection should be considered when there is clinical evidence of regional metastasis, high TNM stage, high histologic grade, and involvement of regional nodes. Because of adverse effects in pediatric patients, radiotherapy should be used only in selected cases. Long-term follow-up is essential to rule out late recurrence.

~from Mucoepidermoid Carcinoma of Parotid Gland in Children

The parotid gland is the large salivary gland that is positioned in front of each of your ears; the one that hurts when you eat something very sour.