Carter's Home

Playing before surgery. The nurses were wonderful!

He was completely out of it when he got back to his room.

Mommy, I sick! He was not a happy camper.

Very tired boy, but he was so happy to be coming home!

This is what he has today. No stitches, just steri-strips. Looks kind of nasty, but doesn't seem to bother him.

Carter is home and doing well. He is having a hard time chewing and swallowing harder foods, but he managed yogurt and hot dogs for lunch. He is thrilled to be home and wanted to play Guitar Hero. That tells me he is not too terribly sick, which makes me happy. :) He doesn't have any restrictions, but I'm hoping he takes it easy for the next couple of days. We have a follow-up appointment in 6 weeks. Dr. Elmaraghy thinks he got all of the cyst. YAY!

Carter's Surgery

Carter is having surgery tomorrow at 1pm to remove his thyroglossal duct cyst. We have to be there at 11am for all pre-op stuff. His surgery takes about an hour and a half, then he will go to recovery for a couple of hours. I will be spending the night with him and he should be released Friday morning. I will keep everyone posted tomorrow by texting. It should be a fairly simple procedure. This is a great site to see some pictures of thyroglossal duct cysts and how they remove them. Some of the pics are kind of graphic, so if you are squeamish - don't look!!

http://www.ghorayeb.com/Thyroglossal.html

Radiation & Chemotherapy

We just got home from meeting with the doctors in charge of Kurt's treatment. First up, the radiation oncologist, Dr. Kaka. She said it is a good and a bad thing that nothing was found during the PET scan and Kurt's last round of biopsies. It is good, because he doesn't have another large mass, but it is bad for the way she needs to use the radiation. Now Kurt will be receiving radiation over a larger area, because they do not know where to concentrate it. They want to make sure they get all of it. Dr. said he should start to feel the effects around the 10th-12th dose of radiation. He was fitted for his radiation mask, also. He said it was really tight!! Next up was the chemotherapy oncologist, Dr. Srikantiah. She is going to put a port in Kurt, so they don't have to search for veins. He will receive three doses of the chemotherapy drug, Cisplatin. She said he will probably lose his hair and it will make him sick, since it is such a high dose. They will also be watching his blood count, kidney function, and hearing.

So, his treatment schedule will look something like this. WEEK ONE Monday: Radiation (lasts about 30 mins.) then over to chemo where he will receive 2 hrs of I.V. hydration then his chemo for 2 hrs., then 2 hrs of I.V. hydration. Tuesday through Friday: Radiation for 30 mins. then 2 hrs I.V. hydration. WEEK TWO AND THREE Monday: Radiation, then they will check blood count, kidney function Tuesday - Friday: Radiation Then it will start all over again with him getting another dose of chemo on Monday of week four and week seven. Those will be really long days but as with all things, we will get through them. They are tentatively thinking about starting May 10th.

The most important thing at this point will be to keep him eating or they will put in a feeding tube. As treatment progresses, his teeth and gums can become really sore and his throat could swell making it difficult to eat. He should avoid sharp, sugary (like candy), and really spicy foods. There are only so many mashed potatoes, oatmeals, and scrambled eggs a person can eat. So, if you have any good soup or casserole type recipes, please pass them on. Probably be trying out some smoothies and shakes too. I'm open to making him anything as long as I can keep him eating. Thanks for all the love and support!!!

Kurt's Cookout

Kurt's co-workers and friends at AK have decided to put together a cookout with all proceeds going to Kurt for the medical expenses we are going to have over the next couple of months. He works with Randy Endsley who is the owner of Heritage Vineyards Winery, where they are having the cookout. We have some wonderful friends who are really supporting us and that means a lot. They have really worked hard on this. In addition to the meal, I know they are raffling off several items and are still planning some of the final details. I know they are making out flyers to place in area businesses, so if you want a flyer for your business or workplace (please check with owners/managers about posting flyers first) email me at jennknicely@yahoo.com and I will let our good friend Michelle know. As more details become available, I will let everyone know. I hope we see everyone on May 22!!

Bella News - Sleep Study results

When Kurt spoke to the neurologist secretary, she said she would send him a copy of the sleep study. We just received it today. It shows that it has been sent to the pediatrician, so it should be interesting to see how long they take to report back to us. The irritating thing is that it shows it was dictated on 4-11; that's 5 days after the study, but it has taken this long for them to get it to us.
These are the results as best as I can understand them. It shows that she had 99 arousals and 15 awakenings. Her REM sleep measured at 9.6% and it should be between 15-30%. It says there were no apneas (breathing is interrupted by a physical block to airflow) and 6 hypopneas (episodes of overly shallow breathing or an abnormally low respiratory rate). With an episode of hypopnea, there remains some flow of air to the lungs. It also says that there were no periodic leg movements and no EEG abnormalities the night of the study.
Our ER Dr. said to test for seizures, they will hook them up to an EEG and flash lights and take them in and out of seizures, so she may have to have another EEG at some point. The good news is that her CT scan came back fine, so that's a big positive. At this point, we just have to wait til the 20th, so we can get with someone who is an expert at this.

News from The James

ebroc.com/html/zoom/p_mask.htm

Kurt received a call today from his radiation nurse. She got the test results from Dr. Ozer (surgeon at The James). All the biopsies and his lingual tonsils came back cancer free! He has appointments Monday with his radiation oncologist and chemotherapy oncologist. We should find out the game plan then. Plus, on Monday he should be fitted for his radiation mask. That's what we were told last visit, but I'm not sure how they will proceed since they can't find his primary. They will actually bolt him to the table while he's getting radiation, so he doesn't move. The above picture is a radiation mask. He has a wonderful nurse and she said when they are done, we get to take it with us. They have actually had patient's kids use them for Halloween. lol You have to keep your sense of humor!

Some News

Well, we had a phone call yesterday from our pediatrician calling to refer Bella to a neurologist and they called today. Bella's first appointment with a neurologist is May 20th. Seems forever away. The worst part is that Kurt should be into treatment by then and who knows how he will feel. We haven't heard anything from Kurt's biopsies or Bella's sleep study. The neurologist's secretary/scheduler said she could see Bella's sleep study in their computer system. Now, we have to wait on the results of all of that.
Carter's surgery is still scheduled for April 29th. I will be so relieved when they get this cyst out. He's been hacking and gagging for the last week. It's gotten really big and is starting to irritate him. We are supposed to find out the surgery time a couple of days before; so much for planning! He should only have to spend one night. Dr. Elmaraghy said he might send him home if he was doing absolutely perfect and had no complications.
We have had three trees removed from our property and we are having our roof replaced from damage this winter. Just found out today that we have three layers of shingles and no tar paper, so it's a mess. Why isn't anything ever simple?!?

Bella's 6th Birthday Pictures

Carter, Kurt, and Bella - my little sickies!

Hello All!!

Welcome everyone! This seems like the new thing to do. So here I am. I figured this is a good way for everyone to keep up with all of the Knicely family medical issues.