The road to cancer

So many people ask how we knew there was something wrong...The story from the beginning until now.

Megan first felt a small knot on the right side of her neck back in October after being sick for a week. After a few weeks we went to the doctor and she gave her antibiotics for 10 days. We went back to the doctor after 14 days when it hadn't gone away. The Dr. had her get a chest xray and some lab work done. They all came back fine. She called a surgeon who recommended we wait a month and if it didn't go away, come see him. We only waited two weeks because the knot was getting larger and was causing pain. It took 10 days to get into see the surgeon. He recommended it be removed. He said it was probably an infected lymph node, but he'd biopsy it and culture it. Two weeks later she had surgery on Thursday, January13.

The surgery was supposed to last 30 minutes, and it drug on. After about 90 minutes, finally the surgeon came on. He broke the news -- it was cancer. He said it was a malignent carcenoma and she'd need chemo and radiation to shrink the tumor. An oncologist came in to talk to us and I gave permission for a port to be surgically placed in her chest. After another 90 minutes, she was in recovery. She was sent home later that evening. She was in a lot of pain, but ok.

The next two weeks was a whirlwind of hurry up and wait. So nerve wracking waiting on answers and visiting cancer doctors. The final biopsy report came back on the Monday after the surgery. It wasn't what they thought - it was thyroid cancer. Great news! Thyroid cancer seems to be the easiest to treat and cure. NO chemo! Megan was so excited she wouldn't have to lose her hair. :) Weird thing though, it's mostly an adult cancer, so our oncologists rarely see a kid with thyroid cancer. Wednesday she had a CT scan.

Thursday, we visited a head and neck surgeon. News to me, one had seen her in the operating room. So, we saw him. He looked at her CT scan (I could tell he didn't like what he saw) He saw a cyst on the back of her brain, 2 tumors in her lung, a tumor on her thyroid, and 2 other tumors. He said we needed someone better than him. He referred us on to his partner who specializes in Thyroid's. We saw him on Friday. He said he does 200-300 thyroid surgeries a year. He gave us all the possible complications, but said he would do his best to avoid them. So he would take out her thyroid and hopefully 60 of the 70 lymph nodes on the right side of her neck.

The surgery was the next Friday. It was supposed to take around 5 hours and start at 11:30. He was late and they didn't take her back until 1:00 pm. The surgeon finally came out around 7 pm. He said the cancer was agressive and massive and we would probably battle this for many years to come. He took out the thyroid which had a tumor on it, 3 other large tumors, part of the parathyroid (he left 2 strands of it, and all she needed was 1 to survive. It controls the calcium and Vitamin D) He also had to take a juglar vein and a voice nerve. He said she could live without the vein and it was all just surrounded by the cancer. He didn't think the voice nerve could even work after the surgery, even if he was able to leave it. He wasn't sure if her other voice nerve would work. If not, she would need a trake to talk. If it did work, he could do another surgery to repair her voice. Not great news, but she was in recovery.

She spent Friday night until Sunday afternoon in the PICU. She had 37 staples in her neck with an incision from the left of the bottom of the neck, around the neck and up to the back of her ear. She had two drain tubes out of the bottom of her neck. Her right eye was almost swollen shut. Both of them hurt. Her throat hurt very bad from the tube they had down her throught during surgery. But she could talk! She was softer and a bit raspy, but she could talk! Later the surgeon said it was a miracle. No adult would ever be able to talk after what he did. We were over joyed. He can do a surgery later to repair it, but no rush. yippee!

She continued to feel better and the drains were able to be removed on Monday and Tuesday. She started with a pretty bad headache on Monday night, and the oncologist said to stay, but the surgeon said to go home on Tuesday afternoon, right in the middle of the ice/snow storm! I wish we would have listened to the cancer guy!

Her neck was healing nicely, but her throat, eye, and head pain continued, as well as a buzzing in her ears. It continued to get worse until it was almost unbearable and she started vomitting, so we went back into the hospital on Sunday, Feb. 6. They did a CT in the ER, but it was ok. They admitted her thinking she just had a bad migraine.

On Monday the oncologist asked a nuerologist to come in. He then ordered an MRI. They found blood clots in her brain that was causing her brain to swell and that is what is putting pressure on her eyes, head, and ears causing such horrible pain. UGH. The next day they told us she had a very rare case of vein thrombosis. She had many series of blood clots in her brain, and today the neurologist showed me 3 pictures of her brain. You can see 5 major clusters of clots. He thinks this is caused by removing the jugular vein during the surgery. That vein had probably been the major vein pumping blood out of her brain and through the neck. From it being removed, it then caused a backup of blood, causing blood clots to form all through the vein system in her brain. The surgeon disagrees, of course. (I still love the surgeon who did a fantastic job)

The neurologist and surgeon both have never seen a case like this in all their years in medicine. The neuro had been researching online to find another case like hers and so far he can't find one. The oncologist today said he called the National Cancer Institute to see if they had ever seen anything like it - and of course - NO. So, we are in uncharted waters, hoping they find the best solution. So far they are giving her shots of blood thinner in her belly twice a day to help prevent future clots and help dissapate the ones she has. They are contemplating ways to get the swelling down in her brain to give her pain relief. They are thinking of giving her steroids or doing a spinal tap to remove fluid. The Dr.'s are supposed to converse and come up with a plan. They will do another MRI next week to evaluate the clots.

She is getting Dilaudid for pain every two hours, and it seems to really be helping, until it wears off. Plus she gets Vitamin D, Calcium, Thyroid medicine, stool softener, and her asthma meds. Oh joy. She also has to get blood drawn for labs 3 hours after her blood thinner is given. They also drew a bunch of blood yesterday to run some genetic testing for anticoagulent studies to see if she has a predisposition for clotting. (results in a week) No history on my side or her dad's sides that we know of.

A pediatric opthomologist came to see her today also. He checked her vision because her eyes have hurt since she first got out of surgery, and haven't gotten better. She also started having blurred and double vision. He says it's all related to the brain swelling putting pressure on her eyes. He thinks it will go back to normal after all the swelling and pressure go away. He can't explain the pain on her eyeballs and the numbing drops didn't help. bummer.

A huge problem has also been her port, a devise that was put in surgically during her first surgery. It is what they use instead of an IV. It goes directly into a large vein and is used to give chemo, draw labs, give fluids, etc. It was what caused her the most pain in the beginning and it continues to do so. Every nurse that sees it says it's in a weird spot. It's on the right side of her left breast and the nurses have had a lot of problems accessing it. They have stuck her at least 12 times since Sunday night trying to access it, plus she's had 2 IV's. She hates needles so bad and just fretts and cries every time they mess with the port. So today they decided to get a dye-injected xray done to see where the needle was in the port. And we found that she had a duo port, (2 access points) not just a single port! UGH. The needle was NOT in the port, so back we went to get re-stuck. We have had 8 nurses try to access the port. Finally around 6 pm tonight they accessed both sides of the port. Unfortunately, only 1 ended up really working, but hey, at least 1 is working! So after 13 days of not eating, tonight at 10 pm they put in TPN, a feeding tube, 1 huge bag of fluid nutrients and 1 smaller bag of fat. Thank God!! Her feet today got tingly and cold and the dr. thinks getting protein in her system will help that. I sure hope so.

Such a rough road, but we're doing our best. Time for bed...got another blood draw at 1 am and they're going to check the port every 2 hours tonight. FUN! :)