Tonyababyrn
Mouseketeer
- Joined
- May 20, 2006
- Messages
- 163
Hi all!! Welcome to Trace's MAW/GKTW pre-trip report. We met with the MAW granters in January to officially make the wish. Trace loves animals/zoos so he wished to stay at the Animal Kingdom Lodge at Disney so he could watch the animals, but MAW said that would be a separate/shorter wish to stay on site. So, we decided to stay at GKTW and MAW is trying to arrange for Trace to be able to do the Behind the Scenes/Safari tour even though he is only 12 and it has an age limit of 16. Hope they come through with that.
A little background on us and Trace:
We are a family from a very small town in central Louisiana. Hubby and I have been married for almost 25 yrs (next week
) and have 3 children--Kathryn 22, Kelsi 17 and our wish child Trace who is 12.
Our family (except Katie who was at college)--taken at a Louisiana Ice Gators Hockey Game where Trace was asked to visit the locker room and meet the players. In pic is Mom, Dad, Trace, massively cute blue-eyed hockey player and Kelsi.
Katie,Kelsi and Trace-at Katie's college graduation last year--2 months before Trace's diagnosis
Trace and the afore-mentioned massively cute blue-eyed hockey player
Our journey started last spring/summer when I noticed what I thought to be a swollen lymph node under Trace's right ear. I am a nurse, so, with no other symptoms at the time, other than a loose molar, I let it go. I knew that lymph nodes can become enlarged with any kind of inflammation on the corresponding side. When it didn't go away after the tooth came out, I brought him to the pediatrician who immediately ordered lab work and an ultrasound.
And the panic set in
. I had worked with his pediatrician for years at the hospital and she knew that it was time to get it checked. She later told me that for swollen lymph nodes she usually does some antibiotics and monitor, but that since I had been watching it for a few months, it was then time to get it checked out. So we get the US and labs and wait for reports. She called the next day with a surgeon referral to have it removed. Report said it looked like a cyst intertangled with the lymph nodes. This was on a Thursday and we saw the surgeon on Monday.
Surgeon diagnosed a Brachial Cleft Cyst--a congenital disorder where some embryonic tissue left over from the cleft in the neck in utero didn't completely dissolve away and can reoccur later in adolescence. Being a nurse, I did my research and read that BCC usually is found down on the side of the neck and not up under the jawbone under the ear lobe...where the lump was. But, he was the surgeon, and we scheduled surgery for the end of July...about 2 wks later.
Surgery day was...stressful. Sisters and grandparents all there. It took about 2 hrs and the first thing the surgeon said was.... "well, that's not what we thought it was.".
But, he couldn't/wouldn't tell us what he thought...I went in to mommy mode and remember only hearing the word necrotic. He said he would call Tuesday with pathology report.
LONG LONG LONG weekend..... Tuesday came and went with no call. LONG LONG LONG night. Wednesday at noon, we start calling surgeon's office. Finally about 2pm, he calls with report.
He starts with "I was waiting for confirmation from Johns Hopkins and the Mayo Clinic, and it looks like CYSTIC MUCOEPIDERMOID CARCINOMA of the RIGHT PAROTID GLAND.
WAIT!!! WHAT???? Carcinoma??? That's cancer!!! My baby boy has cancer??? Surgeon said it was low grade and that we would discuss it more the next day at his post-op checkup.
We told his sisters, then Trace and then went and told his grandparents. Long evening. I stayed up allll night doing research and reading about prognosis, subsequent surgery, radiation, chemo, etc.
Post-op appointment was uneventful, took off steri-strips and discussed next surgery in which he wanted to remove the entire parotid gland--which is the large salivary gland that sits in front of your ears and hurts when you eat something very sour. I had read that the facial nerve travels through the middle of this gland and it is a very specialized, delicate surgery to which you need a surgeon who does the procedure frequently.
We were referred to MD Anderson Cancer Center--Head and Neck Division. His preliminary ultrasound and CT scan there indicated a small remainder of the tumor left and he had his second surgery on October 15th with clean pathology of the gland and 19 lymph nodes. YAY!!
Here he is in recovery:
He is recovering well from his surgery and has a huge scar. He calls it his Harry Potter scar because it is shaped like a lightening strike...from the top of his ear, down to under is ear lobe, along his jawbone and then straight down his neck.
He just had his 1st 3month scans at the end of Feb--which were clear. Next appointment is end of May.
Sooooo...back to Trace and MAW!
He is a very smart, although shy and quiet little boy. He also has some sensory processing problems--too much sound and he freaks out. We are a homeschooling family and he has no interest in sports. He prefers to play by himself, so not a lot of friends. He loves his computer and animals. Loves Star Wars, Indiana Jones and LEGOs. My husband's 5 brothers all went in together and got Trace the LEGO Death Star and gave him a party to celebrate his "cancer free" status in November.
He was so happy!!! It was awesome.
Our MAW granter emailed yesterday and said she needed the dates for sure, that she was working on his wish and that we would get the final confirmation on dates soon. We chose to drive, so no airline reservations. Our oldest will be flying over to join in mid-week and we are staying a few extra days.
Looking forward to this trip! We have a LOT to celebrate--Trace's "cancer-free" status, Katie and Kelsi's graduations from college and high school respectively, and my husband and I's 25th wedding anniversary!!
A little background on us and Trace:
We are a family from a very small town in central Louisiana. Hubby and I have been married for almost 25 yrs (next week
) and have 3 children--Kathryn 22, Kelsi 17 and our wish child Trace who is 12. Our family (except Katie who was at college)--taken at a Louisiana Ice Gators Hockey Game where Trace was asked to visit the locker room and meet the players. In pic is Mom, Dad, Trace, massively cute blue-eyed hockey player and Kelsi.
Katie,Kelsi and Trace-at Katie's college graduation last year--2 months before Trace's diagnosis
Trace and the afore-mentioned massively cute blue-eyed hockey player
Our journey started last spring/summer when I noticed what I thought to be a swollen lymph node under Trace's right ear. I am a nurse, so, with no other symptoms at the time, other than a loose molar, I let it go. I knew that lymph nodes can become enlarged with any kind of inflammation on the corresponding side. When it didn't go away after the tooth came out, I brought him to the pediatrician who immediately ordered lab work and an ultrasound.
And the panic set in
. I had worked with his pediatrician for years at the hospital and she knew that it was time to get it checked. She later told me that for swollen lymph nodes she usually does some antibiotics and monitor, but that since I had been watching it for a few months, it was then time to get it checked out. So we get the US and labs and wait for reports. She called the next day with a surgeon referral to have it removed. Report said it looked like a cyst intertangled with the lymph nodes. This was on a Thursday and we saw the surgeon on Monday. Surgeon diagnosed a Brachial Cleft Cyst--a congenital disorder where some embryonic tissue left over from the cleft in the neck in utero didn't completely dissolve away and can reoccur later in adolescence. Being a nurse, I did my research and read that BCC usually is found down on the side of the neck and not up under the jawbone under the ear lobe...where the lump was. But, he was the surgeon, and we scheduled surgery for the end of July...about 2 wks later.
Surgery day was...stressful. Sisters and grandparents all there. It took about 2 hrs and the first thing the surgeon said was.... "well, that's not what we thought it was.".
But, he couldn't/wouldn't tell us what he thought...I went in to mommy mode and remember only hearing the word necrotic. He said he would call Tuesday with pathology report.LONG LONG LONG weekend..... Tuesday came and went with no call. LONG LONG LONG night. Wednesday at noon, we start calling surgeon's office. Finally about 2pm, he calls with report.
He starts with "I was waiting for confirmation from Johns Hopkins and the Mayo Clinic, and it looks like CYSTIC MUCOEPIDERMOID CARCINOMA of the RIGHT PAROTID GLAND.
WAIT!!! WHAT???? Carcinoma??? That's cancer!!! My baby boy has cancer??? Surgeon said it was low grade and that we would discuss it more the next day at his post-op checkup.
We told his sisters, then Trace and then went and told his grandparents. Long evening. I stayed up allll night doing research and reading about prognosis, subsequent surgery, radiation, chemo, etc.
Post-op appointment was uneventful, took off steri-strips and discussed next surgery in which he wanted to remove the entire parotid gland--which is the large salivary gland that sits in front of your ears and hurts when you eat something very sour. I had read that the facial nerve travels through the middle of this gland and it is a very specialized, delicate surgery to which you need a surgeon who does the procedure frequently.
We were referred to MD Anderson Cancer Center--Head and Neck Division. His preliminary ultrasound and CT scan there indicated a small remainder of the tumor left and he had his second surgery on October 15th with clean pathology of the gland and 19 lymph nodes. YAY!!
Here he is in recovery:
He is recovering well from his surgery and has a huge scar. He calls it his Harry Potter scar because it is shaped like a lightening strike...from the top of his ear, down to under is ear lobe, along his jawbone and then straight down his neck.
He just had his 1st 3month scans at the end of Feb--which were clear.
Next appointment is end of May. Sooooo...back to Trace and MAW!
He is a very smart, although shy and quiet little boy. He also has some sensory processing problems--too much sound and he freaks out. We are a homeschooling family and he has no interest in sports. He prefers to play by himself, so not a lot of friends. He loves his computer and animals. Loves Star Wars, Indiana Jones and LEGOs. My husband's 5 brothers all went in together and got Trace the LEGO Death Star and gave him a party to celebrate his "cancer free" status in November. He was so happy!!! It was awesome.
Our MAW granter emailed yesterday and said she needed the dates for sure, that she was working on his wish and that we would get the final confirmation on dates soon. We chose to drive, so no airline reservations. Our oldest will be flying over to join in mid-week and we are staying a few extra days.
Looking forward to this trip! We have a LOT to celebrate--Trace's "cancer-free" status, Katie and Kelsi's graduations from college and high school respectively, and my husband and I's 25th wedding anniversary!!
)
