Hats & Hair (loss) plus a Poll

One of the side effects we were told Kellee would have because of the radiation treatment would be hair loss at the area being treated, which in Kellee’s case means he will lose the hair on his head. Because we have known this for a while we have been on the look-out for hats to add to the one hat he has been wearing. (See post titled, “What a Combo (Night)” for photos of Kellee with his hat.) Unfortunately for Kellee he has the curse of the big head and finding hats that fit is often a problem. If the size on a hat does not say XL, it will be too small. One size fits all hats do not work either! Kellee comes by the big head naturally though, he is very smart and his daddy has a rather large cranium as well! Auntie Tami brought him some hats and a few do-rags on the day of the biopsy. When the Three Amigos (Heidi, Tami, Faithe) were in Florida, they looked for a hat there but had a tough time finding XL sized hats. Faithe did bring one hat back, it was a cool hat that Kellee liked, but it was still a bit small. I spent some time on it the other night and altered it some, hopefully it will work. We also ordered a few hats and they just came and he now has quite a few choices.
To date, Kellee has not lost his head of hair…yet. We did butch a lot of his hair off early on when we first started this journey. At that time there were some of his friends who cut their hair short as well as a show of support. When the hair actually does fall out there has been talk of possibly some other guys joining Kellee with the same hair style. Kellee has told his brothers and myself that he really does not expect us to cut our hair. However, I am still thinking about it. Here is where I’d like the input of those who read this blog, please participate by taking the attached poll. I will take the poll results into consideration when deciding to buzz my head when Kellee loses his hair.

Doctor Day with Tulips

Friday, April 30, 2010 – Doctor Day, Heidi & Kellee left for Iowa City early this morning for the last radiation treatment of the week. Below is Heidi’s summary of the day and week:

We’ve finished our 2^nd week of treatment in Iowa City and have good news.  An MRI was taken Wednesday and it shows the tumor is reducing in size! – after only 9 treatments!  Which is what the Dr’s expected but seems amazing to me that results can be seen that quickly.  Kellee has one more week of the whole brain and spine radiation – which is the hardest on him.  Because such a large field is being covered by radiation he’s really tired and depends on those anti-nausea pills.  The hope is the nausea should lessen once the radiation is more focused in the brain.  He’s lost 10 lbs which is a little concerning but understandable.  Just need to get the most calories in the least amount of bites – a whole new thought process for me!  More good news – there is a room for us at Hope Lodge (the Ronald McDonald house for adults) on Monday!

Next week is Kent’s week with Kellee in Iowa City.  We’re managing fine, because of your prayers and support, they give us strength!  Kory comes home from school (Iowa State) next week, which will be nice so it’s not so quiet here at home during the week.  Then the following week Kerry will be home too after graduating from Central – Yea more people to mow the lawn!

And now for those of you who will not be in Pella to enjoy the tulips, here are a couple of photos of tulips taken this week. In case you didn’t know, Pella is a small town in Iowa which celebrates its Dutch heritage each year the first weekend in May with a festival. This year the dates are May 6, 7, & 8. For more information see Pella Tulip Time link -  http://www.pellatuliptime.com/

Red Tulips

Tulips

Coming soon…the poll!

Pix from Iowa City

Thursday, April 29, 2010 – Heidi told me Thursday when they were in the waiting room at Radiation Therapy, one of the nurses came out  who is one who usually is helping with his treatments but she called someone else, Kellee said to Heidi, “good I wasn’t ready yet.”  almost like he needed to psych himself up for it and he wasn’t quite there yet. And he is only 8 treatments in of an approximately 32 treatments planned and the process is already seeming long. After the focus on the spine is complete, hopefully the treatments won’t be so tough on him. Pray for Kellee to have the strength he needs to get through the treatments!

Heidi and Kellee decided not to stay in Iowa City for Thursday night and drove home after treatment this morning. On their way home Kellee called to let me know they were on the road again. I asked him how he was doing? He said he honestly felt this week was going better than last week. I think it is because he is getting more rest than he did the previous week. He probably tried to do too much. He is making sure he rests and it makes a big difference.  Heidi took some photos at the Suburban Extended Stay, the place worked out well. The room had a recliner that worked great for Kellee, it had good lumbar support for his back. The kitchenette was very handy too!

Kellee in the Recliner!

Kitchenette at Suburban extended Stay

They called me at work and asked if I would be willing stop by Applebee’s to pick up a burger for Kellee at their Car-side-to-go, as it sounded good to Kellee. He has been losing some weight (10 lbs.) during these first two weeks of treatment because at times he just does not feel like eating because food just doesn’t sound good.  There have been times when he has to force himself to eat. I gladly went to pick it up since it was something Kellee thought he would be able to eat!. He finished the burger but he couldn’t eat the fries, so I took one for the team and helped him with those. After the meal Kellee said he had so much on his agenda, (record a song, pick songs out for The Bridge, etc.) but he was tired and was going to rest. He did get some sleep this afternoon.

Kellee said he did get a call from Hope Lodge today and we will be staying there beginning next week Monday. We are happy to know we now have one place we can stay for the remainder of the treatments, even though we very much appreciate the offers we have received to stay in people’s homes, we don’t want to disrupt people’s home routines. Plus the Suburban Extended Stay is a good back-up just in case.

Watch for this blog’s first ever poll, coming soon!

Wednesday’s notes from Iowa City

Wednesday, April 28, 2010 – Here is the latest as of 10:45 am this morning.

They just brought Kellee back for his CT scan 9:40am or so – he had his radiation at 8am when we arrived and then shortly after that was done they came to get him to put the IV in for the contrast – I went with him. We were in an exam room, nurse Kelly told us what was going to happen the rest of this morning.
• He was going to have an IV for CT contrast and the MRI contrast. Neither of the tests would be very long
• He was fitted for the Bite Block that will be used for the boost (the next session) the bite block – he holds in his mouth and then if his head moves during radiation treatment, they can tell from balls on this contraption that reflect beams or something and they shut down the machine. This is a more focused radiation than the last sessions, so the need for precision. We’re not sure what day the new sessions start we’ll find that out Friday during the Dr. visit
• He will also be fitted for the new mask that will be a half mask – instead of covering his chest this one will cover just under his nose, so he can have the bite block in his mouth
• They will also mold a pillow for his head so it will be in the same position each time.

They gave us something to read about the CT contrast – it’s different from the MRI contrast and can have some side effects like nausea, vomiting, thus the reason he couldn’t eat this morning. I saw Kellee’s eye’s get big when he read that. Nurse Kelly put in the IV and shortly after that Kellee became faint and had to lay down – Nurse Kelly put a cool washcloth on his forehead – he was breathing fast and I could tell he didn’t feel good. They turned the lights low and just let him lay there for a while. Nurse Kelly explained the contrast wouldn’t be that bad and it was a small amount. We’ll see when he’s done.

Nancy the bite block nurse said that she thought he might feel better once he’s having more focused radiation, instead of the whole brain and whole spine – makes sense to me.

It’s been a big morning already for Kellee. I bet he’ll be really wiped out this afternoon! Me too!
The connection is working better now – I think I must have gotten disconnected when I shut the computer to go to the exam room with Kellee. So it was operator error – of course!

MORE FROM WEDNESDAY:
Kellee was done with the tests and fittings around 11, we picked up the van from the sweet valet parking and drove to Pita Pit. Kellee thought that sounded good today. We brought it back to the hotel and he ate almost the whole thing – more than I could eat! Then he slept on and off for most of the afternoon. My dad and his wife Sandy stopped by on their way to Pella for a softball game. It was nice having someone to talk to who was right here while Kellee slept. Later in the afternoon Kellee ate the rest of his Culver’s Cookie Dough Concrete Mixer that we got last night at 9pm (after American Idol & Glee). We think we’ll come home Thursday after treatment #8 and then return Friday AM for treatment #9 and the Dr. visit. Friday when we visit with the Dr. we’ll learn what the MRI/CT scan showed today and we’ll see if treatments will continue done the path we were told initially or if they’ll make some adjustments.

Monday & Tuesday notes from Iowa City

Tuesday, April 27, 2010 – I am going to Post the notes Heidi sends to me about each day – Here is her review of Monday & Tuesday…

Things are going fine so far. We got to IA city yesterday around 2:30 so thought we’d have time to pick up his prescription at the pharmacy. Didn’t think we should do the valet parking since we didn’t know how long it might take at the pharmacy, so took us awhile to find parking and then decided we’d just go to radiation therapy first since the pharmacy is open until 8pm we had plenty of time. Turns out we spent more time waiting for his radiation treatment than we did at the pharmacy. He got in for treatment at 3:30, then we walked over to the pharmacy and were able to pick up the pills right away, we had called them in but they said it wouldn’t be ready until Tuesday so thought we might have to wait. Kellee felt pretty good last night – a little off – is how he describes it. He ate mac&cheese and a little later a sandwich too! This morning he felt pretty wiped out from the treatment so is sleeping now.

Tomorrow he has treatment at 8:30, CT scan at 9:30, and MRI at 10:30 wow he’s going to be really wiped out after all that! Don’t know yet if we’ll drive home or not. We decided even if we do – we’ll just keep the room so we don’t have to pack up and unpack again – which is quite an ordeal when you have computers, clothes, and food! It is only costing $33 so we both think it’s worth it. But we may just be staying too. We’ll make that decision after all the tests tomorrow.

Kellee ate some cereal this morning and I think I’ll make egg salad for lunch – I guess I better do that. I worked for a couple of hours this morning – checking emails and moving meetings. I’ll work a few more hours this afternoon if I can find enough to do – if not I can read Anna Karenina!

They’re here…Images of a Tumor

Monday, April 26, 2010 – Kellee had his bible study last night and one of the guys asked to turn the lights out, he wanted to see if Kellee would glow in the dark from the radiation treatments. Just to put to rest any tumor rumors, Kellee does NOT glow in the dark!

Heidi and Kellee left for Iowa City at 1:00 pm. They did not use the valet parking because they were going to go to the pharmacy and pick up some more zofran (anti-nausea meds) for Kellee after the treatment. Since the treatment today was scheduled for 3:00 pm which is not the normal time, they had to wait for about 30 minutes before he was called in. Heidi was able to go into the treatment room today and see the set-up. Heidi called me to report while I was still at work. They had no trouble finding the Extended Stay and were all checked in and moved in when talked. Kellee was still feeling pretty good and was making Mac & Cheese.

When I got home from work, I took the dogs out and at the front door was a small package (basically a CD case) from the University of Iowa Hospitals & Clinics with the words imaging Information Enclosed on the side. The MRI images had arrived via UPS this afternoon. After a quick loo at the many images, few of them are now posted below. We may add more later as we look at them more.

I spoke with Kellee around 9:20 pm Monday night. He was doing pretty well, tired and occasionally a bit butterfly-ee but otherwise not bad at all. In addition to the Mac & Cheese, he had a sandwich. He told me he wold keep me posted on whether eating all that was a good idea.

MRI Side View 1

MRI Side View 2

MRI Top View 1

MRI Top View 2

A Russian Award

Sunday, April 25, 2010 – Kory called us sometime back and told us he had won an award from the language department @ ISU.  Kory is in his second year of studying Russian. He was not sure what the award was for exactly, but he wanted to let us know. Since Heidi & I have now been parents for (t-cough) years, we have learned a thing or two about when one of our boys tells us something, it means even if he doesn’t come out and say so, if he is sharing it with us, it is important to him.  So we made plans to go to Ames.  We went to the 10:30 service @ TRC and then had Sunday dinner at Faithe’s with my dad and Kellee. Kerry had a senior picnic (or some kind of meal) @ CUI. Kellee gave us a report on how the morning went at The Bridge, which was very good. But he did say how getting up @ 6:00 am to get ready and then drive to Ottumwa, set-up, practice, do the service, tear-down and drive back to Pella by 12:30 made for a long morning and it wiped him out. He was looking forward to a nap after we ate.

We left around 2:30, (Heidi drove so I was able to snooze a bit on the way up, yeah!) When we got to Kory’s room, Heidi and Kory started to gather items he really wouldn’t need the rest of the school year so we could take them home with us and I started a bit of repair work.

The ceremony was held in the Memorial Union on the Iowa State campus @ 4:30 pm. Here is the official title of the event – “The Annual Awards Ceremony to Recognize Outstanding Students in The Department of World Languages and Cultures at Iowa State University.”  (Try saying that 10 times fast!)  Students were recognized for their achievement in the various languages taught at ISU. Kory was recognized as an outstanding student in Intermediate Russian, he received a nice book of Russian novellas (in Russian of course) and a certificate.

Kory receiving award

After the ceremony we took Kory out to eat, dropped him back off at his room and then left for Pella. Heidi called her sister and talked to her all the way to Pella. (How to girls do that?)

Other than being tired, Kellee said he really felt pretty good today. Tonight he even went to El Charro (a local Pella Mexican restaurant) and got a Burrito Loco to go and he said he ate it all! Chips and salsa were really a no go because the chips were a bit hard on the back of his throat.  Kellee left for the Bible study with some buddies around 8:45.

This week when Heidi is in Iowa City with Kellee, it will be the first time as we have traveled this journey, I will not be in Iowa City at the same time as Kellee, so the blog posts this week will be a joint effort between Heidi and myself.  Heidi will have the first hand knowledge and she will either do the blog posts or pass the information to me, we haven’t quite figured it all out yet. But we will do our best to keep the blog updated and to pass along any new developments and/or prayer requests.

A Show Cancelled, A place to stay and American Airlines.

Saturday, April 24, 2010 – Yesterday afternoon Kerry came over a bit to hang out until band practice. Sons & Heirs had an outdoor show scheduled for Saturday afternoon in Ames and the band was getting together to prepare for the show. Kellee had just gotten up from nap when Kerry came over and he asked Kellee how he was doing. Kellee said he had been napping and he really would rather keep napping than get up for practice. Additionally, Kerry was going to go out to eat with his G-pa T. Friday night and he asked if Kellee wanted to go along. Kellee said no as he would need to rest after practice, he did not feel like going out. Those two things are a definite sign the treatments do take a toll on Kellee. Normally he would be excited about band practice and a show the next day and he would otherwise typically accept such a dinner invitation.

After the boys left for practice, I called Hope Lodge to inquire about the Extended Stay and getting the referral from Hope Lodge so we could get the reduced rate. All they needed was to know what days next week we for sure wanted a room and they would take care of it. So the room situation is covered for another week.

I made one more phone call, this one to the Radiation Therapy department in Iowa City.  About 2-3 months back Kellee had planned a trip to Cancun with his friend Jasen and possibly some other guys. He had already purchased his plane ticket. Then this issue with George (formerly Dwight) the tumor came up and threw his trip plans out the window. The planned trip time is right in the midst of his treatments so he will obviously not be going. Kellee contacted American Airlines, the carrier from which he purchased the ticket, to see what his options might be for ticket changes, credit or refund. His success rate with the phone calls to the airline’s customer service department was not good. He said he could have used an interpreter to talk to the people on the other end of the line. He was not sure in what country their call center was located, but he thought he may have been talking with Apu from The Simpsons. Kellee then went on-line and sent a message asking if American has any type of policy for when a customer has an extreme medical situation. He did get an email response asking for proof of the medical issue from the attending physician  and then they would “consider” a refund.  Which brings me back to the phone call. I spoke with Dr. S’s nurse, Kelly, and she took the information and the fax number to where to send the proof of medical issue. She told me she did this for another patient previously and would take care of it. The staff at the U of I Radiation Therapy Department continue to demonstrate how they are top-notch people and more than willing to help in what ever way they can if it is in their power to do so!

A little while later Heidi came home and I went into work. When I got home at 5:45, Kellee was on the couch and not feeling real well.  He didn’t feel like doing much of anything. He had planned to work on some music loops for the show, but he didn’t feel like doing that. He texted his contact for the show and told him, they might be cancelling out of the show. Kellee ate some toast and oatmeal. A bit later he started to have back spasms and was quite uncomfortable. We got the heating pad out and he laid on the floor for nearly two hours.

This morning the band did cancel out of the show. Which was ok with Kerry because he has quite a bit of homework to do. Kellee had practice this morning for The Bridge on Sunday. When he got home he had some cheese and crackers. In reading the information on radiation therapy and nutrition during treatment we received from the hospital, it is recommended patients keep food in their stomach. Eating smaller more frequent meals helps a lot of people. We have a feeling a lot of this will be learn as we go, trial and error. Kellee plans to just rest and take it easy today, he wants to feel well and have energy for The Bridge tomorrow.

We had some special visitors Saturday afternoon, Ella and Ezra Welch stopped by along with their mom and dad – Kim & Chris. In a previous post I mentioned they had made some cards for Kellee and today they dropped them off special delivery right at our house. Kellee was asleep so he didn’t get to see the twins, but Heidi and I did! Heidi mentioned it was so much fun to see kids not afraid of our little dogs. El & Ez are used to bigger dogs at home so they had no problem giving them kisses, etc. It was very nice of them to stop by. We now have their cards hanging on our refrigerator!

Prayer Requests: Pray Kellee will get the rest he needs and will be able to lead worship at The Bridge on Sunday.  Pray the nausea will be minimal and bearable. Pray Kellee will be able to eat and food will sound good to him. Next week is Heidi’s turn to be with Kellee in Iowa City, pray for her while she watches over him and for rest for her as well.

DOCTOR DAY – Treatment #4

Friday, April 23, 2010 -  I got up a bit early hoping to use the elliptical I saw yesterday as we walked by the hotel’s fitness center. When I went in I found out the elliptical was out-of-order so I had to use a treadmill. I am not much of a veteran on a treadmill, in fact I think I can count the number times I actually tried to work out on treadmill on one finger. (After today’s fiasco I know what finger I want to use to do that counting!) Keep in mind, I am not a very coordinated guy, I nearly fell off the thing 3 times! I am glad the other guy in there was not paying too much attention.  I found a pace where I could stay on the thing and yet get a bit of a work-out. Breakfast was provided at the Holiday Inn and we left for the Radiation Therapy clinic at U of I.

The valet parking drop-off area was packed this morning, must be a lot of people going for treatment at that time of the day on Friday.  At the reception desk, I was able to talk to Jeff behind the counter and tell him how much Kellee appreciates his greeting when he comes into the Radiation Therapy department. I set up the Treatment time for Monday @ 3:00 in the afternoon. We wanted to get it later on Monday so Heidi and Kellee won’t have to leave so early for Iowa City on Monday. We were reminded today we see the doctor. Kellee was called right away again and before I knew it his treatment was done. Kellee said they took some more x-rays today. We waited just a few minutes and we were called to go see the doctor. First they weighed Kellee, took vitals and then told us to wait in the room #2 across the hall.

The doctor asked Kellee how he was doing so far  treatment, any sickness, etc. Kellee related his one episode of actually getting sick but it was because he hadn’t taken the zofran the night before. The doctor agreed he should take it on the 24 hour dosage rate instead of just “as needed” which was on the pill bottle. Kellee said other than that he feels “butterfly-ee” in the stomach once and a while and is tired.
We had a list of questions for the doctor and we were glad we had a chance to ask. We asked how the treatment will change once the course of radiation is completed on his spine. The mask will be different in that it was have a mouth guard and he won’t need the bean bag thingy that holds his legs in place, but he will still be lying down. We asked about how we had been told it would be OK to have either Heidi or I take a look at the set-up sometime, I wanted to know if taking a photo of the set-up would be allowed. I wanted to ask before we just did it. He said that would be fine. We are going to wait until the spine radiation focus is complete before we go in and take a look. So it won’t be until after next week that we will have a photo to post of the set-up. Another question was about the scheduled appointment we had made with the ophthalmologist in June, should we still go? He said it would be a good idea to see how the vision may have changed. Then Kellee asked if his vision would go back to normal for him (no double vision)? The doctor did not give an affirmative answer on this question. He said there may be improvement, but it is also possible that 6 months down the road there could still be no change. It is just one of those things we will have to wait and see. We asked about Kellee’s jaw soreness. Dr. S. said in some patients they experience some soreness in the glands (I am sorry I don’t remember the official medical name) at the back of the jaw for the duration of the treatment. Kellee wanted to know his opinion of using the pressure point wrist bands? Dr. S. said he was just at a department meeting where these were discussed and the basic conclusion was – no hard a fast data on them but why not use them, they can’t hurt and are relatively inexpensive. There may have been a few other questions, but they do not matter. We asked about the x-rays taken today and the doc said that was for the radiation treatment to make sure they were hitting the right spots. We then asked the one question we get asked often and have never been able to give a definitive answer. Is the tumor actually benign or malignant? “It is malignant, but if it is possible it is the good kind of malignant in that it is very treatable with radiation. So Kellee asked the doctor, “that means I am lucky to get this one right?” Dr. S. was reluctant to say Kellee was lucky, but he said compared to most of the brain tumor patients he sees, Kellee’s situation is so much better.  Then Kellee said: “I have been hesitant to say this, but this means I do have cancer right?” ”Yes, you have brain cancer” was the reply, “but the prognosis is very good.”  (Anyway you look at it, you could say it is a blessing it is the type of the tumor it is!) Our last question was about the medical records we had requested, we got everything but the one thing Kellee really wanted to see – an image of the MRI, would it be possible to get one. “Do you want a disk or want me to print one off?” he asked. “A disk would be great!” They would fill out a request and send it to the medical imaging film management area and we could pick it up in about 10 minutes! It turns out when we got to the Film Management area, we were told it would be at least 45 minutes, but they offered to mail it, to which we agreed. So sometime next week, look for a possible image of the MRI.

On the way home Kellee wanted to work on some songs to see if they could be used and or changed for their show in Ames on Saturday. It was like my own private concert, which made the rainy drive so much better! When we got home, Kellee called the Hope Lodge to check on when we will be able to get in there and was told that they will not have a room for us next week. But assured him the following week there would be a room. The person he spoke to recommended a few places to us. She said cancer patients can stay at  the Heartland Inn in Cedar Rapids for free, but he was not so sure he wanted to do that drive each day. There is also the Heartland Inn in Iowa City which has good rates and she also mentioned the Suburban Extended Stay in Coralville which has even a bit better rates for Hope Lodge recommended patients but, they have suites including kitchen facilities.  At least we know for when we need to make the arrangements and it sounds like we have some reasonable options.

What a Combo (Night)! (Pix now added)

Thursday, April 22, 2010 – We were staying at the Holiday Inn in Coralville. On Tues-Wed-Thur of each week this Holiday Inn has a snack and beverage time from 5-7 in the room just off the lobby.  Since there has rarely been a time when a Dutchman would pass up free food and drink, being the good Dutch boy that I am, I went down at about 5:30  and had a few munchies and a beverage and then brought up a bowl of soup to Kellee and he ate most of it. At about 6:30, I decided I wanted to go back down and see if there was anything else I might want.  As I was approaching the snack room, I saw some guys in hall that looked familiar…but I wasn’t sure.  I heard them say, where’s Chris? Another said, oh he’ll find his way. As I turned the corner I saw him from his backside, it was Chris Weaver. (For those of you who don’t know Chris, he is a senior @ Central College. He is a member of the Central Vocal Combo group, plus he lived with us a good part of the summer of 2008. When he lived suggested he change his name to Kris with a “K” to match the rest of out boys!) I came up behind him and asked what he was doing here? Turns out the Central Vocal Combo was performing from 8-10 pm at The Java House and they were staying in the same motel as us. I told Chris if Kellee felt up to it, we might try to make it. I went up and told Kellee about it and he decided to go. We ate most of our left over pizza, (fortunately our room has a fridge), and got in the van for the trip to The Java House at 8:40. We found the place after only being lost for a few minutes. (Yes I turned right when I should have turned left. That is not a political statement!) We got there as they were doing the last two songs of their first set.  We found the last table open in the room up by the stage. (Side note, I drank some tea at The Java House.) At the break we talked a while to Gabriel Espinosa, the combo group leader. A bit later he asked if Kellee wanted to do a song in the next set. Kellee agreed and Gab said he would call him up about 3-4 songs into the set. Kellee sang one of his older songs, La La, he said he did this one because his new songs have so many extra sounds, etc., they might not go over so well with just him on the guitar. La La  is the last song currently up on his MySpace page. http://www.myspace.com/kelleevanhemertmusic  It was fun and combo show ended on time @ 10:00, Kellee said the best part was after-wards he did not have to help with the tear down and load out!. I took some pictures and will post them later on Friday, don’t forget to check back to see them. I don’t have the correct cord with me to do it tonight. On the way back to the room, Kellee said that was long enough time to be out. He was tired and ready to get back and rest. Me too!

Pictures are up!

Kellee perfomring the La La song @ The Java House

Kellee & Gabriel Espanosa

Kellee and Kris with a "K"