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.
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