Piano Lessons

Isabella started piano lessons last month. She had been interested in playing piano or violin since last years Lincoln Talent Show. She saw a lot of kids playing instruments and really thought she would like it. So I started hunting for a piano. I was all over craigslist and had asked people to keep an eye out for anything that might come up. We were lucky enough to have Kurt's Aunt Carol give us her piano. She doesn't play anymore and thought Bella would be able to use it for piano practice. She loves it!! She knows Twinkle, Twinkle Little Star, Mary had a Little Lamb, and two songs that she can read and play out of her music book. It's very different having a piano in the house, and sometimes very loud!

Soccer Boy

Carter had his first soccer practice at Kids America on Thursday! He has a game on Saturday, so should be interesting. They all looked so cute running around out there on the field. He loved it and said "I want to do that again!"

Trick or Treat

As always, my mom and I took the kids to Darr's Farm this year. The kids were Jessie and Buzz Lightyear from Toy Story. We always go in costume to get pictures, pick out pumpkins, and this year we even did the corn maze. Bella led the way. (I'm surprised we are not still in there!) The kids got to paint their pumpkins to keep inside. Last night was trick or treat. The kids had a good time and we met up with my mother's group and the girls from Bella's class. There were not a lot of places handing out candy, but the kids were just happy to be out in their costumes!!
By the way, in one of the last photos, Carter is next to a little girl in a pink dress. Her name is Avril and she has planned their wedding. LOL Too cute!! They play together every week at the mother's meetings. Very sweet. Also in the last photos, Bella is Alice from Alice in Wonderland, because it is United Way week at Lincoln and they get to dress up as their favorite storybook character.

The Fair

Bella and Carter had a great time at the fair. Bella splits her time between kiddie rides and big kid rides. Bella likes the rides and playing games. She went through the barns but was not as enthused as Carter. He was in love with the animal barns this year. He liked seeing the cows, rabbits, and chickens the best. He does not like the pigs!! We won a fish, of course. Carter tried for a rabbit and I'm thankful he didn't win. lol The fish's name is Lily. We decided she was a girl because she looks like she is wearing lipstick. Enjoy the pics. (By the way, the picture of the dog, Gravy, is actually Keri dressed up for Bob Evans. Too funny!!)

Dancing

Bella performed at the fair on Sunday. She had a great time!! They had only been able to practice for a couple of weeks, but all the girls did a wonderful job.

?Migraines?

Bella had another "episode" yesterday. She gets a really bad headache and stomach ache. She always seems to throw up and then becomes really pale and lethargic. We believe she may be having either a regular migraine or an abdominal migraine. They have a lot of the same symptoms, but it's possible. She had one in August and one yesterday. I am keeping a log of what happens, when it happens, what she ate, what may have changed to try and find a trigger or at least show a pattern of her having these. Her pediatrician said that's what it truly sounds like but they are really hard to diagnose and there is really no treatment if she is having them infrequently.
I think this may have been what happened to her in April, but it was probably her first and she was so disoriented, and we didn't know what was happening to her. It starts in the morning and she has it all day long. I can get her to sleep which is the best thing for her and the next day she is fine. We don't know anyone who has a history of migraines in the family so I am not really sure where it comes from.

Port Removal

Kurt gets his port removed tomorrow. YAY! Seems like the final step in all of this. He goes in at 6:40am and his surgery scheduled for 8am. Should be ready to come home by 10 or 11am. His only restrictions are he's not able to lift heavy things for a couple of days.

Bella doing excellent in school. She took her first AR test yesterday and got 100% and has her first spelling test on Friday. Seems like such Big Kid stuff. She's loving her ballet/jazz class. She's doing a performance at the fair on Sunday, October 3. They are dancing to "Baby" by Justin Bieber. So cute!!!

Carter is a wild man as usual. LOL He's doing wonderful on the potty. He's started going #2 which is awesome. He spends all day in underwear and will either tell you he has to go or just go by himself. I always know when he's went by himself, because he comes out naked. He's so funny!!

I hosted my first Mother's Meeting today, which was fun. I haven't been able to go to the last two, because of appointments, so I was glad to have some adult time with some other mothers today.

Physical Therapy

Well I went to Dr. Gibson today. He doesn't think it's a torn meniscus, but he can hear that it is crunchy in there. He was going to put me on an anti-inflammatory medicine, but Dr. Alverson had put me on the prednisone and he said that is really strong. So, I have to go to physical therapy twice a week for 3 weeks, then I have a follow-up visit with him. It's going to be a pain in the butt. I have my first appointment Wednesday.

Kurt is having his port removed on the 23rd. He was going to wait until around Christmas time, but he has lost so much weight that it is protruding from under his skin and looks like it has moved a little. Plus, it gets itchy and he is supposed to have it flushed every 6 weeks, so that will be one less thing to worry about.

Carter has a follow-up visit with his ENT on Wednesday too. He wanted to see him back 6 weeks after his tonsils/adenoids came out. It's just a routine visit, but will take up much of the day as we have to go all the way to Dublin.

Keep Ethel Rose in your thoughts on Tuesday, as she will be having surgery.

Learning

Bella doing really well at school. She's really liking it and hasn't had any problems. I think her favorite class right now is music. She really wants to play the violin, so music lessons may be in her future! She also started her ballet/jazz class tonight. We decided not to have tap lessons. She loves to dance, so jazz seemed like her thing. They are learning a routine to Justin Bieber's "Baby" to perform at the fair this year.

Carter started potty training. I feel like we are getting a late start with him, but I didn't want to start and stop wile Kurt was going through treatment, so I just decided to wait. He will wear underwear all day and be completely fine. He hasn't went #2 in potty yet, so I worry about him getting backed up, but I'm sure it will happen when it happens.

Kurt starting 3-11, so we will be having our first week without him here in the evenings. He's still getting his strength back and learning what he can eat and what he can't. He's loving eggs this week, which has to be good for him!

I'm happy everyone doing so well. My knee not bothering me as much. Not sure if anything healing (it feels pretty funky) but maybe steroids helping with some of pain and swelling. I'll take what I can get. Carter always wanting someone to chase him, so I'm not exactly relaxing!!

Knees

I went to my PCP Thursday. I may have a torn meniscus, which is the cartilage in your knee. She sent me to get an x-ray at CCMH and I have an appointment with an orthopaedic doctor on September 13th. She gave me a steroid to be on for the next 9 days to see if it would help, but she didn't seem really optimistic especially when I told her it had made a popping sound. I think the next step if it doesn't heal on its own will be an MRI, then if it's a bad enough tear I may have to have surgery. Everyone else is on the mend (Kurt's back to work and getting stronger everyday, Carter's done with all his surgeries, and Bella is rested, happy, and enjoying school), so I figure it's my time to be a sickie!!! LOL

We went to a cookout tonight and had a great time. Some moms from Lincoln get together and have breakfast and one of the moms invited all of us out for a cookout. It was so nice. Bella was able to play with the girls from her school and I think it has been helpful for Carter who is getting to play with some other kids too! So far, it has been a really good school year. Bella doing wonderful and I'm getting out and meeting new people, so it's a positive for both of us.

First Day of First Grade

Last night we went to Open House to see Bella's room and meet her teacher. She has a couple of girls in her class from last year and everyone was excited to see everybody. I saw a couple of moms from last year which is always nice.
























Then this morning it was off to school. I heard her get up and she came downstairs already dressed. I'm glad she was so excited for the first day; plus, she was excited to wear her new dress!! Carter was very sad to see her go. He cried last night but he got excited when the bus came, then when they left he hung his head and said, "I gonna miss Bella." Poor thing!

School Time

Well Bella starts school tomorrow. Hoping for a better year. I know we have better teachers, or so I've been told. Lots of experience and they know how to handle the kids. Major plus! We are going to open house tonight and at 8:30 tomorrow she will be off to school. I cannot believe the kid's summer break is over. June & July were not easy months and August just flew by. Hope everyone has an easy and fun school year.
Kurt started his second week back to work. He worked this past Saturday and had Sunday off. He definitely needed it. He's more worn out then he thought and needed that day to recuperate. My mom kept the kids Sunday and we spent the afternoon going through the shops in Roscoe and had dinner out. It was a nice relaxing afternoon.
Jason McCormick comes home today!!! We are all so happy he's back and hoping they have an easy transition back into normal life. I know the kids are super excited to see their dad. Welcome Home, Jason!

Happy Birthday!

HAPPY 37th BIRTHDAY KURT!!!!!

Back to Work

Kurt has been back to work for 3 days now. Things are going well; he has come home and slept for about an hour each day, but it's a big change to suddenly be working after 5 months off. I'm trying to get back into my routine of cleaning and getting the house organized. I think he has a good time just catching up with all the people he works with. I give him a couple of weeks before he's griping about all of it. lol Then things will be back to normal!

Back in the Game

All of Kurt's drs have released him for work. He went to see plant dr yesterday and he is good to go. He will start next week and have some update training. He also went to see his dermatologist this week. He has had a bunch of new moles pop up on his neck. She said they would be considered more like freckles and that they are from the radiation. She didn't see any moles that needed removed so he good to go there too.

Carter is back to his usual self. He never had any blisters in his mouth. The red dots on his hands went away in 2 days and his feet have finally cleared up. It was indeed a very mild case. Hopefully, Bella will escape having it.

Bella has been doing better. She has been sleeping better and seems more rested throughout the day. The last couple of days Carter has went into her room and woke her up at 645am so she has been cranky and mouthy, but I can understand that. He
got into trouble today for doing that!

I'm ready for life to be normal again. Hopefully Kurt does well at work and Bella has an easy transition into first grade. It hasn't exactly been a relaxing summer for any of us!

The Good and the Bad

Kurt went to a follow-up visit with his oncologist in Columbus. He said Kurt looks good, he can see the effects of the radiation in his mouth and throat but it is healing. He didn't see any patches of thrush around his mouth, just on his tongue, so that is starting to clear up too. Dr. told him that every two months he wants to see him and should just be a regular exam. Kurt has had so much radiation from treatments that they do not want to be doing a lot of scans or x-rays. If it would come back, we should notice it in lumps, bumps, and voice changes. He did say that usually the radiation oncologist likes to do a PET scan 12 weeks after radiation. It's more about showing tissue then trying to see the cancer. He also signed Kurt's release back to work, so Dr. seems to think he is definitely recovering!

My bad news: Carter has hand, foot and mouth disease. It is a mild case, as he doesn't have huge blisters and nothing in his mouth. It is contagious, but hopefully since it is a mild case we can avoid Bella and Kurt getting it. Dr. said getting surgery knocks down the immune system, plus he was in the playrooms in the hospital, so hard to tell where he picked it up. There isn't anything they can do for him, it just has to run its course. Poor kid! He's been through a lot in the last couple of months. He really didn't need this.

Recovering

Kurt went to Zanesville today for labs. His white blood cell count is up, which is good. The higher that is, he will then be better able to fight off the thrush. Thrush is getting better. It's not completely gone, but he's moving in the right direction. He has more energy; he said today that he feels like a new man compared to two weeks ago. He is talking about trying to go back to work the week of August 16, so we will see.

Carter doing well. He's been up at night with some throat and ear pain. The drs told us that between day 5-8, he could get worse. It hasn't been bad, but I can tell he's not feeling like himself quite yet. He is however running around and playing most days.

Everybody doing better. It feels like we are over some of the worst of it and hopefully we will be able to enjoy August before Kurt goes back to work and Bella goes back to school!

Carter's Tonsils and Adenoids

Carter has his tonsils and adenoids removed today at 2:40. I hate that it is so late, because he gets hungry and crabby. Our wonderful neighbors brought down some treats for him for when he comes home. They are so good to us!!

We celebrated Ealgene's birthday yesterday and Keri's is today. Happy birthday ladies!!!

Bella spent Sunday and Monday with the gang (Shanna, Cinda, Mary, Kristy, Ealgene, Cole, Brice, Hannah, Maddie, Nathan, and Kenzie) at the Columbus Zoo and Zoombezi Bay. They had a wonderful time.

Kurt's hemoglobin is up to 9.9, should be a 12 but they didn't seem overly concerned. His white blood cell count is still low. They never called and said anything about his kidney levels so we are hoping they are back in normal range. Dr. thinks thrush is getting a little better. So hopefully we are on the upswing and he will start feeling a lot better in the next couple of weeks!!

Blood and fluids

Kurt is at Zanesville today getting 3 liters of fluid to help flush out his kidneys. His kidney levels off so they are trying to flush him out, plus he got somewhat dehydrated so all of this helping. He just found out he doesn't have enough blood. His hemoglobin level is 7.7 and it should be a 12. This explains why he is still so tired and lethargic. He's going to Coshocton Hospital for 2 pints of blood tomorrow. Nurses said it will take 4-6 hrs so it is a lengthy process, but nurses also said he will be amazed at how much better he feels. Hopefully this will also help boost him up so he can start fighting this thrush.

Jungle Jack

Kurt still battling his thrush and going for hydration in Coshocton. Bella went to Columbus ENT yesterday. He said her tonsils and adenoids do not need to be removed. So it is only Carter needing surgery on July 22nd. My mom and I took kids to the zoo after the dr. We got to see the polar bear. So cute. We spent most of our time at Jungle Jack's Landing which we had never been in before. You can touch some of the smaller animals, like snakes, lizards, turtles, armadillos, a opossum and even baby flamingos (they were so cute and they were all brothers!!). Carter touched them all and this is the child who freaks out if there is a fly in the house!!! Plus, it has rides for the kids. They had a really good time. Bella going again next weekend, but will get to see more of the animals.

Thrush

Kurt has went through a full prescription of diflucan and we had it refilled the other day. He went to Zanesville today to have his levels checked and they said he still has thrush. He can't seem to get rid of it. He's hacking and coughing all day long and doesn't want to eat because it irritates him, however if he could get his strength and immune system boosted back up then the thrush would go away. He can't seem to win. They gave him another prescription for something else to help get rid of it. The nurses told us once you have it, it is so hard to get rid of it. He is so tired and annoyed by it. It is the one thing holding him back at this point. I'm hoping new prescription kills it!!

Last Radiation

Kurt is officially done with chemo and radiation. He has three more times of hydration and it's all over. He got a certificate of completion today and got to bring home his mask. Kristy, Kaylie, kids, & I decorated for when Mary brought him home. The radiation people asked him if he would like to be a guest speaker at a golf pro am at Zanesville Country Club. They are also talking about using him in Genesis campaigns for Intensity Modulated Radiation Therapy (IMRT) which is the type of radiation he received. He hasn't said if he will do it, but it's very nice that they asked. They all really liked Kurt and his attitude. We are all so proud of him and thankful that he has made it through all of this and now we can hopefully get him healthy and back to his old self. Thanks again for all the love and support the last couple of months!!!

Last Chemo

Kurt had his last chemo treatment today. YAY!!! They gave him a lesser dose today since he has lost so much weight. He has hydration tomorrow in Zville and the rest are being done in Coshocton. He also has his last radiation treatment tomorrow. They called on his way down Wednesday to tell him they didn't have power. When they did get it back on, he decided not to go. He's not feeling too bad at this point. I keep my fingers crossed that it continues.

Cancelled Chemo

Kurt's white blood cell count too low today to get chemo. He had a really rough weekend and I think we have figured out why. He was done with his antibiotics on Thursday and on Friday the dr. said the thrush was gone. It wasn't. He told me last night it felt like it was burning. Up until that point he had just said it hurt. They confirmed it was thrush and wrote him another prescription and he also has another mouthwash to help. He did have radiation and he only has three more treatments. He will try again for chemo on Thursday. Dr. seemed pretty sure his counts would be back up by then. So he will have to do I.V. fluids in Coshocton this weekend and Zanesville on Monday. She also said they will do a weekly check of his counts over the next 3 weeks. Weight check: He has lost another 11 pounds in the last two weeks. He has lost around 30-35 pounds total.

Last Week

Well, I will start with Bella news. They are saying her "high voltage" brain wave spikes are not seizures and we should not be concerned. We can up the dose of melatonin or try benadryl to get her to achieve a deeper sleep. This is not something we do forever, but we are trying to "change her pattern of sleep behavior". They also said they could use a prescription drug, that's also an adult high blood pressure med, that would help her sleep. I'm not sure I'm willing to go that far. I've upped the dose of melatonin and may be willing to try benadryl. Still interested to see what is said about tonsils and adenoids.

Kurt has gone downhill somewhat. He's having a hard time eating anything and has a lot of pain. He's spending a lot of time sleeping from the pain meds. His radiation dr. told him he could go to an all liquid diet if need be. He's still says he's ready for Monday's chemo. Hopefully his lab work will be ok, so he can get it and be another step closer to being done.

I will let you know how this week goes. It will be a rough one, so think of him often.

Not Much News

I know everyone has been checking and I haven't updated in a while. Not much going on. Kurt's throat sore. He's having a tough time with hamburger. Got sick on it and scratched his throat up, so now he avoiding that. Only 5 more treatments of radiation and chemo next Monday. Dr. said he might feel a little worse after he stops getting radiation, then around 7-10 days, he should start feeling better. Could take up to 6 months for food to taste normal again. She also told him some foods may never taste the same! Still waiting on results from Akron. Called and left a message yesterday, but as usual haven't heard anything! I'll let everyone know when I hear something. I would like to thank everyone who's been sending cards, especially Aunt Brenda! It's very nice getting some sunshine in the mail and not just bills!

Happy Father's Day

Kurt enjoying his two days off and getting presents from me and the kids for Father's Day. It feels like a nice, lazy Sunday before we start next week's craziness. Kurt has a full week of radiation and Carter has his three year check-up (and probably shots - Yuck!) on Tuesday. Hopefully, we will hear from Akron about our next step with Bella. Hope all Dads have a wonderful Father's Day!

EEG

Bella had her EEG today in Akron. I think I walked out more confused than ever. We first discussed her sleep. I told her she's still tired during the day and that we never got Bella's PCP to give us a reading on the sleep study. We know she has issues sleeping but nothing being done, so this dr. said she is going to get us to a sleep specialist up there.

Bella's EEG being classified as "normal" at this time. This means she is not having seizure activity.....however, her brain waves are spiking as she goes to sleep, which does not follow the typical brain wave pattern. She is going to send the EEG on to the epileptic specialist to see if he has any answers as to what may be causing this.

We also talked about her episode that landed her in ER that we were told was focal seizures. They have no idea what it was or what caused it. If it happens again, she definitely wants to get an MRI/MRA done. She said looking back on her notes, it sounded like a confusional migraine, but they are rare in kids, although they do happen. They are just not sure. At this point, we are just watching her and if it happens again, we will know what tests to ask for.

We should hear more next week on what epileptic specialists has to say about EEG and maybe even have a referral to a sleep specialist, or at least have her sleep study forwarded to one. I'm still going to have her tonsils and adenoids looked at, so I can rule that in or out. Keep you posted with any new news.

Resuming the Schedule

I figured out why Kurt having acid reflux and throwing up over the weekend. He had run out of his main anti-nausea medicine and wasn't really taking much of anything, so I put in a call to Dr. who told him what to take until he could get more meds. They are super expensive for a prescription, so they hand out sample packs. He's doing better now, but really took a toll on him, as he is very tired. He was able to get more of the medicine today, so we have it if we need it.

He was also able to resume radiation treatments. Dr. looked at him today and the thrush seems to be getting better. That was the "raw" feeling so even his throat does not feel as sore. Dr. also told him to start doing some exercise. He's lost somewhere between 25-30 pounds, and she is concerned with his lean muscle loss. He will be able to reach his goal of single digits this week. After Friday, he will only have 9 more treatments.

No Treatment

Kurt's "raw" throat is due to thrush, a yeast infection in his throat. Dry mouth, chemotherapy, and radiation can affect the immune system and lead to an increased risk of developing thrush. So they didn't do radiation today or tomorrow and he goes back on Wednesday to be re-evaluated to see if he can start back up treatments. He's disappointed, because he wants to push through and get it done, but dr. said it's better to take a small break now than a large break later. He also saw chemo dr. who said his white blood cell count back up, which is good news, and they have him scheduled for his last chemo treatment on June 28th.

Sore

Kurt is very sore today. He has been really tired all week and hasn't gotten much better from chemo. He never got throw-up sick, just really tired and has major heartburn/acid reflux. He said his throat has gotten really sore the last couple of days. He describes it as "raw". He only has 12 more radiation treatments and 1 more chemo day. We are both wishing it was over. I fear the next three weeks will not be as "easy" as the first five (not that any of this could be described as easy!). This last chemo treatment really knocked him down and he just can't regain his strength. Keep him in your thoughts.

Tonsils & Adenoids

Yesterday, I took Carter to see his ENT in Cols. for a follow-up from his thyroglossal duct cyst removal. Dr. Elmaraghy said he looks great, the incision looks great. His rate of reoccurence has dropped majorly, since we made it through these first 6 weeks! Very good news. I also asked him about Carter's tonsils and adenoids. You can hear him breathing all the time, he snores, mouth always open. Dr. said he remembers seeing Carter's scan and that his adenoids were big. SO....he is scheduled for adenotonsillectomy on July 22nd.

Also, I asked him about Bella. I have been thinking it was her tonsils and adenoids from the beginning. Her pediatrician said her tonsils were enlarged, but she wanted a sleep study. So we went along with it. The melatonin makes her fall asleep fast at night, but it is not improving her quality of sleep. I don't think we are getting anywhere that way. I told Dr. Elmaraghy about her sleep study, that it does not show apnea but a decrease in oxygen called hypopnea, her snoring, mouth open, restless sleep, lack of quality sleep. SO.... she is also tentatively scheduled on July 22nd for adenotonsillectomy. She has an appt. with Dr. on July 10th and he will determine if she needs surgery. He said it's easier to take her off surgery rotation then to put her on. If she needs surgery, they will be done same day, back-to-back and put on same floor.

I do hope they both get surgery and they both start to breathe and sleep better. I'm hopeful from all my research that this could really help Bella. We are also still scheduled for an EEG on June 17th in Akron. If that comes back all clear, we should be good to go.

It seems like a lot, but I'm also hoping that getting them done together will take some stress off Kurt and I. They can heal together and its one night in the hospital for us, rather than splitting it into two different days. Never a dull moment around here!!!

Birthday

and to Brice, too. Happy 8th birthday buddy!

Chemo Day #2

Well, we survived the second chemo day. His levels were up enough that he was able to go ahead with treatment. If his levels had been where they were last week, they said they would have sent us home. They don't want you too weak to get it, because its important to keep on the schedule as much as possible. As much as this drug kills the cancer, it also wipes out your immune system and attacks your white blood cells. There isn't anything we can do to boost his white blood cell count, but they may have to give him some sort of shot if his levels fall too far.

They did give him Kytril drip, and that really helped. We were also told by a nurse to keep hydrated or that could make him feel really sick. The amazing thing about this chemo drug is that it really saps all the liquid out of your body. Last time Kurt came home, went right to bed, and slept a long time. By the time he got up, he was already getting dehydrated and nauseous from not having the right anti-nausea medicine. This time we had a plan. He came home, drank an ensure, napped for about an hour and a half, then got up and started drinking. He feels a little queasy, but nothing like the first time around. We are making sure he stays full of fluids right from the beginning. We learn as we go! He also asked for some noodles, which is amazing, because he didn't eat for four days last time. This is going much smoother so far - and I hope it continues. He will get another round of radiation, I.V. fluids, and a Kytril drip tomorrow. Will post any new developments!

Half Way There

Well, we officially start week 5 tomorrow. We are halfway there. Chemo and radiation tomorrow. Hopefully, Kytril drip will help and he will not be as sick. I'll try to keep everyone posted on his progress. Also Carter goes back to Columbus on Wednesday for a 6 week check-up with Dr. Elmaraghy. Doesn't seem like that much time has passed.

For those who don't know, two months ago Kurt's brother Kyle got married. We finally got to see some of the wedding pictures. Somehow, we never ended up with a picture of all of us, but I thought I would post a couple of cute ones we did get!!

Carter Man

Carter had his three year pictures taken. These are probably the best I've ever seen of him. He actually smiled at the camera - it was a miracle!!

Bald Neck!?!

Kurt is losing his hair at the back of his neck. It is from the radiation, because dr. said he would lose his hair where they are radiating at, just like his goatee. The hair on top of his head is fine (well as fine as it ever was - lol). The chemo could make his hair thinner overall, but we haven't seen any effects of that yet. He didn't have to have any treatments yesterday, because of the holiday, but has radiation the rest of the week. He has been using a special mouthwash more, because he has developed some sores in his mouth. He also has a really hard time sneezing and yawning. Anything that stretches those muscles and skin in his throat makes it hurt. He says when he sneezes, it feels like he is ripping his throat out. Nurse told him not to get sick or he would be in a world of hurt! I'm glad Bella out of school and away from all the germs there.

Carter's 3rd Birthday

We had so much fun at Carter's party. He got lots of boy toys - transformers, hot wheels, robots, and power rangers. He got tons of clothes, which he really needed. He's growing like a weed! The main attraction was a scooter from Mamaw and Papaw Knicely and a bike from Mom and Dad. He's getting to be a big boy and needs big boy toys. The days of babyhood are behind us.

Bald Face

Last night I was looking at Kurt's face; his skin is getting redder and feels really smooth in places. I noticed a really dark hair in his goatee and jokingly pulled on it. It fell out! The skin never pulled or anything. He grabbed a bunch of it and pulled and it came out too! When he woke up this morning, he had two bald patches around the corners of his mouth. Needless to say, he shaved his mustache and goatee off this morning. Nothing else is falling out. The radiation dr. said that he would lose his hair where they were radiating at. It was just those two patches. Anyway, now he has a bald face!

Happy Birthday to Carter Man!!

Kytril, Graduation, and a Birthday!

Kurt has went to radiation all week long. His radiation dr. said that they can see where things are starting to happen. His mouth is really red and getting dry. He told me today he is getting sores. Not good. His chemo dr. however had some good news. They changed his first anti-nausea medicine from Zofran to Kytril. Now the dr. said he shouldn't get as sick, because she is also ordering Kurt to have a Kytril drip every time he has hydration. She said she heard how bad last time was and it shouldn't be like that. I hope he doesn't get sick and that the drip helps.

Bella officially graduated from kindergarten today. She's a big kid now and already talking about first grade. She doesn't really get how long summer break is and that she won't go back for 3 months. The melatonin seems to be helping. She's not grumpy and lethargic in the evenings and has actually been sleeping in. To us, that's a miracle.

Carter turns 3 tomorrow. Time has flown by. Seems like just yesterday he was a baby. He thinks he is a big boy too. He is having a Mickey Mouse birthday party. I'm glad we decided to have it and Kurt is feeling well enough to be there. From the beginning, Kurt said he wanted things to be as normal as possible for them. I will post some pictures of Carter's big day when I can.

Kurt's Cookout

Thanks to everyone who helped with Kurt's Cookout. Many, many thanks to Randy & Tina Endsley (Heritage Vineyards Winery), Michelle Walsh, Tina Schlupp, Bud Lupher, Lynda Daniel, Sally Hickman, Tabby Saylor, & Kathy Phillips. Many, many thanks to Bob & Mary Knicely, Jeff & Lori Nichols, Susan Klein (Susans' Footwear & Fashions), Terry Thompson (Terry's Craft Barn), The Sunsational Tans employees (especially Jana!), and everyone who made baked goods for the cookout. Many thanks to our Grill Master, JT, and also to Tim Helbling for helping grill too. We feel so blessed to have seen so many wonderful friends and family who came out to support our family. You all really mean the world to us. Thanks for making it such a special day!

Talent Show

Lincoln Elementary had a talent show today at the high school. Bella and all of the kindergarten classes performed to "Party in the U.S.A." They were so cute. It was nice that we were able to see her and that Kurt felt well enough to go. He is planning on being at the cookout the whole time tomorrow. We will see how it goes. He does get tired easily, so I'm hoping he doesn't where himself out!

Melatonin, EEG's, and Directions

Here are the directions for people planning to come to Kurt's Cookout at Heritage Vineyards Winery on Saturday May 22nd. Take US 36 North from Coshocton Approx 5 miles, turn right on County Road 28 Approx 2 Miles, Turn Left on County Road 24 Approx 3 Miles, Turn Right on Township Road 45, Heritage Vineyard is approximately .5 Miles on the Left.

Bella was at Akron Children's today for her neurologist appointment. The dr did not know what to make of Bella's episode, but wasn't sure it was a seizure, so we are having an EEG done up there on June 17th. We also told her we hadn't had anybody really explain sleep study to us. She looked at it and said she thought she was definitely having sleep problems but that she was going to page the neurologist that read the study. He has recommended Bella start taking 1mg of melatonin. The dr said that melatonin helps regulate our internal clocks. She may not be producing melatonin when she should or getting enough of it to sleep well. When it is dark, your body produces more melatonin; when it is light, the production of melatonin drops. We will see if it helps and if not we will try something else.

Kurt's hearing test went well and all his bloodwork counts were in normal range. So that's a positive. I think he is looking forward to having two days off over the weekend with no radiation and no dr's!

Hearing

Kurt's ears have been ringing which is a side effect of the cisplatin (chemo drug). When he went in for radiation today, he also popped in to chemo dr to ask about it. They are going to give him a hearing test tomorrow. Plus he has to collect urine for 24 hrs, because they think if drug is affecting his hearing it might be affecting his kidneys. If everything comes back fine, they will leave his dosage the way it is. If urinalysis comes back bad, they will either lower his dosage or give him a different chemo drug next time.

Also, many people have told me they are checking the blog and have tried to leave comments. I have changed the settings and now you do not have to sign in or have a google account to leave a comment. Just click comments under the post, type your comment and sign it (so I know who it is from), and under your comment it will have a "post as" option. Just change that to anonymous and now it should let you leave a comment. Hope to hear from everyone!

Tattoo

Kurt got his tattoos today. They are two little "freckles" on both sides of his neck. We were trying to figure out exactly where they were when he got home, but I couldn't see them. He has so many moles and marks already. I said I feel bad for the next person looking for them. He is not having an easy day as far as eating goes. His stomach is still really upset. The heartburn is hard on him. Trying to keep a positive attitude and looking forward to seeing everyone this weekend!

Week 2

Kurt had radiation and I.V. fluids today. He has lost 7 pounds. He's still not eating normally, but slowly getting there. He has heartburn really bad. His next chemo treatment is June 7th (sorry Paula!). They want him to start on a Monday so they can watch his levels throughout the week since he got so sick this time. This also means that we will back up a week because his last chemo treatment will now be June 28th, if everything stays on track. Only radiation for the rest of the week.

1/7 of the way done

Kurt feeling a bit more human today. He did his trek to Coshocton Hospital for fluids, then came home and had cheerios (no milk). Yay! His first meal since Thursday at 1:00pm. He also ate some dinner, so we are making progress. He visited with Keri and his friend, Rusty & his family. I think we are over the worst and we will now know what to expect next time and which meds work the best. One week down, six to go!

Day 6

Kurt feeling a bit better today. He got up and Bob took him to Coshocton Hospital for I.V. fluids. It took about 3 hours. He came home and rested on couch and visited with Michelle (Walsh) while Bella, Lori, and I went to walk at Relay for Life today. He napped for a bit and has managed some crackers. He is not as sick today, but he is still really queasy. He is making progress and hopefully will feel up to a small meal tomorrow.

Day 5 - Chemo Sucks!

Kurt woke up this morning feeling awful. He started throwing up and just felt horrendous. I dropped him at dr.'s office for I.V. fluids and while he was there he started urinating blood. Not good. By the time he left, it was a peach color. He didn't have radiation either. He was just too sick and they didn't want to weaken him anymore than he already was. On our way back, the dr.'s office called and they had us go to hospital to get blood work to check all his levels. Everything came back good and the blood in urine has stopped. He spent the whole afternoon in bed. He was up from 6- 8:30pm and that wore him out. Trying to keep ahead of nausea with a new pill they wanted him to try. He has I.V. fluids tomorrow at Coshocton Hospital, so at least we don't have to drive to Zanesville. It has been a lousy day, but they told him each day he would start feeling a little better.

Day Four - Chemo

Kurt went down to Zanesville for his first round of chemotherapy. He got hooked up for his first two bags of I.V. fluids then we went across the hall where I got to see them bolt him down for radiation. Talk about scary! I was completely freaked out. That mask is so tight you can see the crease between his lips. It's unreal. His tech explained to me everything that was going on and why things were happening. It really is a very technical process. On Wednesday, they couldn't get him lined up quite right and it ended up taking 50 minutes of him being bolted down. Today went smoother and he was on there for about 15 minutes.
We went back to the "chemo room." It's just a room with hospital chairs for patients and regular chairs for the caregivers. Everyone sits around with I.V.'s. Most people were talking, reading, eating, etc. It was as normal as that situation could be. I went on some errands and brought Kurt back lunch. It's amazing to watch these people eating while they are getting chemo. We were there from 9am to 3:30pm. Very long day.
The ride home really did Kurt in. He got nauseous and spent most of the evening laying down. He has several anti-nausea medications, but he is not a good car rider either. It's about 9pm and he just came down and had 4 bites of applesauce. At least it's something. Tomorrow we go back for another round of radiation and I.V. fluids. The nice thing is that they will hook him up and he can be getting fluids while he is getting radiation. I hope a good nights sleep and lots of liquids help keep him from getting really really sick.

Day Two

Well Kurt drove himself to radiation again. He feels fine so far. He had been given a prescription to help stimulate his salivary glands because this whole process can really damage his mouth. He also got a new prescription today for a mouth rinse. There is another young guy who is farther along in the radiation process and he said this rinse is making a world of difference for him, so they want Kurt to try it too. I have bought gels, sprays, rinses, special toothpastes, all things dealing in extreme dry mouth. I hope this rinse will help him too.

In some lighter news, Bella has learned to ride her bike without training wheels. This whole process started last summer but she just wasn't comfortable doing it. Since the weather has been nicer, she has come home and rode her bike in a straight line to the the end of the driveway, turned herself around, then rode back. That was it. She didn't want to do anything else. A couple nights ago she got on her bike and rode all around the driveway. She even rode down our street to a flat spot and rode all around. You would think she has been doing it forever. She is so comical. She can't be rushed through anything. She has just decided she is ready. Now she wants to ride her bike to school. This whole "I'm six and I'm a big kid" thing is going to be a major pain!

Day One

Kurt had his first radiation treatment today. This is a picture he took of his radiation room. He drove himself down and back from Zanesville. He feels fine so far. He said the machine really makes a noise when it's giving the radiation. He says it's a sound he will never forget. He also talked about how the door to the room is really really thick. It is definitely an experience he will remember. He came home and said "One down, 34 to go." He is such a trooper!!

Carter's bandage finally came off. He has a tiny little line. He still screams, "No, don't touch my boo-boo" but it doesn't hurt him. A little Mederma on his scar line and it should fade away.

My crazy news of the day is that we still haven't heard from a doctor about Bella's sleep study results. We had a nurse send them to us from the neurology department at Akron Children's Hospital. We called Akron Children's and they said our pediatrician should be calling us and they didn't sound too happy that we had the results sent to us (which is too bad, because I would be majorly ticked if I still didn't know what the results were!!). So we called our dr. and left a message. A nurse called us back and said the dr. had signed off on it and the only thing they saw on her CT scan was that she had sinusitis. I double checked that she had read results and the nurse said she didn't see anything wrong with Bella. I thought my husband's head was going to fly off; he was majorly mad. She called back a little while later to double check on her sinuses and Kurt talked with her. He was telling her the words disorder and dysfunction mean there is something wrong. She said "where do you see that?" He read her the results we have and she says, "Oh we can't read what that says on our report." Kurt just about flipped. He asked her how the dr. could sign off on something she can't even read. He ended up taking a copy of our report to the dr. It will probably be another 5 weeks before we hear anything. We just want to hear what a medical person has to say about her sleeping; we have read the results and it doesn't sound good to us. It just doesn't make sense that after 5 weeks, we still haven't heard from anybody about it. As Kurt says, when you get more than one doctor involved, nothing can go smoothly, and he is right!