Changes

First off, Happy Mother's Day to everyone!

Secondly, Kurt's treatment schedule has changed. When they called this week for the final times, they did not have a spot open for him to start chemo on Monday. So he is only going to have radiation on Monday, Tuesday, and Wednesday. He will have chemo and radiation on Thursday, so that will be our big day. Then he will have radiation and hydration treatments (I.V. fluids) on Friday. He may have to go down Saturday or see if our hospital here does hydration treatments. I'm sure we will find out more as the week goes on.

It is finally beginning. We are nervous and probably a bit scared, if we would admit it. We are travelling into the unknown. So many questions that can't be answered. I want to thank everyone who will be going through this journey with us. From the friends and family who are making meals for us over the next seven weeks to friends and co-workers putting on this cookout for Kurt. Everyone has been so wonderful - giving of time, love, generosity! We can't express how much you all mean to us and how wonderful you have been. Thank you for caring about our family so much. We love you all!!!

Kurt, Carter & Bella News

Kurt went to see his oncologist, Dr. Ozer on Monday. He said Kurt's lingual tonsil removal and biopsy sites look really good. He was pleased with how well Kurt looked and has cleared him to start his treatment. We are still waiting on definite word from radiation oncologist that we start Monday the 10th. He goes to Coshocton Hospital on Thursday to have his port put in at 8am. Hopefully this will make getting his chemo and drawing blood easier on him. He's bored out of his mind and ready to get started, as much as you can be ready!
Carter came through surgery like a champ. He hasn't had any complications. He has been running around here and playing like a wild thing. His new favorite thing in the world is playing baseball! He loves to hit the ball and is actually a good thrower. I can see him being our sports nut.
Bella had a rough night. Her bed was completely torn up and we could barely get her out of bed at 7:45. She's usually up like clockwork at 7am. When she got up she already had really dark circles under her eyes and was complaining of a headache. She asked the teacher to take a break during school because the noise was getting to her. When she came home she looked like she had broken blood vessels under her eyes, because she has little red dots under them. I'm hoping she gets better rest tonight, because she needs it. May 20th seems forever away, but hopefully we will get on track to helping her.
I am looking forward to a peaceful rest of the week. I'm going as a parent volunteer with Bella's kindergarten class to Rolling Ridge Ranch this Friday. Hopefully we all have a peaceful trip and fun while we are there. Looking forward to some family time on Mother's Day! Happy Mother's Day to everyone!!!!

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.