Coming Home on 12/22/06

Heath's Proton treatments were supposed to be done on Thursday, 12/14/06, but the machine was down for several days. Karis already had plane tickets to come home late Friday night. She talked to the doctors and they said that he needed all his treatments and skipping any of them could be very bad. Since she already had the tickets to come home and since we had several things planned on Saturday and since her husband missed them terribly and since the hospital was reimbursing them for the tickets back, they came home for the weekend.

Heath, Karis and Quinten flew back up on Monday and they will be back home for good on Friday, 12/22/06.

Heath's back is doing much better. It looked like he had 3rd degree burns in a 7 inch diameter circle where they are radiating him but it is healing very well from what Karis said. His blood counts are much better also. His platelets were still low today but they are going back up on their own so he didn't need any transfusions today.

We are very grateful for everyone's support in helping through this process and for the wonderful care Heath got at Mass General in Boston. Heath has 3 more months of chemo treatments back at Moffitt in Tampa. He should be cancer free at that point so keep praying for that outcome.

Heath's blood counts are very low

Heath was at the hospital all day getting transfusions. They gave him 3 units of blood and 6 units of platelets. They are also trying to give him an extra boast because he will be traveling home Friday on a commercial airline. He was feeling awful before the transfusion but Karis said he felt much better afterwards.

Karis told me this morning that Heath's Proton treatment for today has been cancelled because the machine is down. Luckily they had an extra day on their schedule before they are flying home so it shouldn't be a problem. As you can guess, Heath is very much ready to come home.

Overdue Update

Sorry, I've been very busy but that's no excuse. Here's a quick update on Heath.

Heath went into Mass General last Thursday to start another round of chemo. This is the second round of Ifos/Etop that he has had in Boston. It kept getting delayed because his platelet count was too low. The radiation that he is getting is an area where there is a lot of bone marrow which is causing his counts to stay down and not recover. He was done with the chemo last night but they were going to keep him in the hospital until his radiation treatment today at around 1:30PM.

Heath has about 10 more radiation treatments and then he is finished. He should be home on the 15th and I know he is very ready to come home. This is one big step towards his cure. He will need more chemo at Moffitt but I'm not sure of the details. Keep praying for Heath's healing and that he is healthy enough to fly home on the 15th.

Also, Heath's grandmother was admitted to Manatee Memorial. I don't think they completely know what's wrong but keep her in your prayers as well.

Fun times with family in Boston

We all had a great time last week seeing some of the sites. Gary, Peggy, Colt and Karissa came up to Boston to spend time with Heath. Gary, Peggy and Karissa flew up on Wednesday; Colt and I flew up on Thursday.

We started off going to the Boston Museum of Science. Here are a couple of pictures.


This is a picture of us all while we were waiting to go on the Duck Tour, where we saw parts of Boston by land and by river in an old World War II amphibious landing vehicle. Karissa and Allen got to drive for awhile.

Here are some pictures at the New England Aquarium.

Prayers needed for Heath and Jonah

Heath has been doing ok lately but has had some problems since his last chemo. His blood counts were so bad that he had two different days where he had to get blood and platelet transfusions. He was very weak for several days and didn't have much energy to do anything. He is also having severe pains in his right foot. The doctor says that it is probably caused by inflammation from his radiation treatments but we are not completely sure what is causing the pain. They want to start him back on pain meds to try and get the pain under control. He is still getting daily Proton radiation treatments. He may start his next round of chemo on Friday or Saturday. Please continue to pray for healing and strength for Heath.

We found out that Dave and Patty's grandson Jonah was diagnose with leukemia. Jonah is 11 years old. Heath knows Jonah from when Heath worked at Kings Kids. Jonah already had surgery to put in a port and to do a spinal tap. He started chemo treatments which will continue for at least two years. Please pray for Jonah's family, Jonah's doctors and specifically for Jonah as he goes through his treatments.

Boston pictures

Here are a couple of pictures from Mass General when they organized trick or treat for the kids on Ellison 18.

Above we have Heath as the "Mask" and Allen as a big "Hotdog".

Below is a group shot of the kids during their trick or treat tour. They had it very well organized and it was great to see the kids having a good time.

Below is a picture from the hospital and from the apartment, respectively.

Proton Treatments started on 11/02/06

Heath started his Proton Radiation treatments today. He will get a total of 29 treatments. This is why he is in Boston so let's pray that these treatments completely kill his tumor in his sacrum.

Heath finished his Photon Radiation treatments on Wednesday, November 1st. He had 10 treatments. His treatments were scheduled for 4:20PM every day but the staff at Mass General in the Cox Building was very helpful and changed Heath's schedule to help him get done with the chemo earlier. Mass General, just like Moffitt, is a wonderful hospital and we are very glad to be there.

Heath finished his first of two rounds of chemo that he will get in Boston on Monday night and was released from Mass General on Tuesday afternoon. He seemed to tolerate this round fairly well. We'll know in the next 2 weeks how his blood counts hold up and when they can schedule him for the next round of chemo.

Tuesday was Halloween so Mass General Ellison 18 (that's the pediatric floor that Heath was on) organized a trick or treat tour of Mass General for the kids on the floor. It ended with a pizza party where they fed us lunch. Heath and Allen had a good time and yes they were in custom. I'll post some pictures later when I get them.

Update from Boston

Heath is going to start Etoposide/Ifosfamide chemo today. This is the first of two rounds that he will get while in Boston.

They are going to administer it a little different here than they did at Moffitt for a couple of reasons. First, he will get a lower dose due to the fact that he is getting Photon radiation which can affect the bone marrow slightly and put him at more risk with his blood counts. Second, they will give both types of chemo to him at a high rate over one hour for each instead of a high rate on the Etoposide and continuous over 23 hours on the Ifosfamide/Mesna. The reason is because they have to give him Mesna to keep the Ifosfamide from damaging his bladder and the Mesna is considered a heavy metal. Since Heath is getting radiation, they need to make sure there is no Mesna in the radiation field during his Photon treatment because it could cause the radiation to scatter which would cause undesired results. Therefore they will not give him any Mesna for an hour or two before he gets his Photon treatment. Also, Heath was having bladder pains a couple of days ago. They have done two urine tests on him and he appears to be ok to proceed but we will be keeping a very close eye on any symptoms related to bladder pain.

Mass General Hospital and ConquerCancer.org

This hospital seems like a great hospital. Every one we talk to up here speaks very highly of it and says we are in the right place. After getting the awesome treatment at Moffitt, our standards are very high now but Mass General, the employees and the other people we have met here are very nice and professional.

We did meet a very nice lady, Susan Zuker, while we were waiting for Heath's appointment on Thursday. Her husband passed away from lung cancer 3 years ago. Her and her two sons wanted to do something to honor his life and his battle with cancer. They did it in a big way. They created their own Massachusetts license plate and founded the Conquer Cancer Coalition of Massachusetts, which receives proceeds from sales of the plates. It is a local nonprofit organization that works in all capacities to conquer all forms of cancer. She said it took a couple years but they got it done. She also reached out to us in a very nice way and gave us a place to go spend the day and have a good time during our stay in Boston. Also, she was there because her mom currently has lung cancer. Her last treatment is Monday. Her cancer was caught early and she is doing fine. I am very glad that our appointment was at 3PM that day. Ironically, it is 6:20PM for the other nine treatments.

Here is a link to their website, www.conquercancer.org. Check it out.

This might be something we can do in Florida with the help of one of Heath's relatives. What do you think Ken? We already told Dr. Agresta that we would like to do something in the future to help out with the foundation that he started. This could be one of those things.

Please continue to keep Heath and his doctors in your prayers as well as Susan's mother.

Arrived in Boston

We arrived safely in Boston on Tuesday. We are very comfortable in our apartment.

The doctors told us previously that Heath will be getting Proton treatments as well as Photon treatments.

On Wednesday, Heath had blood labs and a simulation appointment. The blood labs showed that he has recovered very well and is ready to start chemo as soon as we can schedule it. The simulation was for the Photon treatments that will be given previous to the Proton treatments. The doctors had told us that Heath will be getting Proton treatments as well as Photon treatments but we weren't sure of the details until now.

On Thursday, Heath had his first Photon treatment. The Photon treatment is a high intensity x-ray.

Heath is scheduled for 9 more Photon treatments which are given Monday through Friday. The remaining Photon appointments are at 6:20PM. On November 2, he will start the first of 29 Proton treatments which are also given Monday through Friday. Heath will get 2 rounds of Etoposide/Ifosfamide chemo somewhere in between but they are not scheduled as of now.

We are supposed to meet with Dr. DeLaney once a week while we are here. Dr. Ebb is his Oncology doctor.

That's it to now.

Karis's dad Bill Eckley passed away this morning

I just talked to Karis and she told me that her dad passed away very peacefully this morning at approximately 10:40AM. She wanted me to mention that the family is doing well. Bill was an avid fisherman and they said he is catching his holy mackerel now.

Back to Boston

Heath, Allen and I will be flying back to Boston tomorrow morning. Karis is still in Ohio with her dad. Karis will be flying directly to Boston at a later date. Please continue to pray for Karis's dad and step mom, Bill and Bonnie, as well as the rest of the family. I will give you an update when Karis asks me to.

Quick Update on Karis and her dad Bill

We flew back home on 10/11/06. Heath is doing good. His blood counts are back to almost normal for now.

Karis had to fly back out at 8AM this morning, 10/12/06. Her dad Bill has not been well and is in ICU at a hospital in Detriot. I'm not sure of all the details but he is not doing well and the doctors are very concerned. Please keep Bill, Karis and the entire family in your prayers.

In Boston 10-4-06

We arrived in Boston on Wednesday after a quick flight. We took a short cab ride to the Holiday Inn right accross from Mass. General Hospital. After we got settled we took a short walk around downtown and had lunch at the original Cheers that the TV show was based on.

Thursday we got up early and had a good breakfast in the Mass General cafeteria. Then met with the doctors that are going to do the radiation therapy, Dr. DeLaney and his assistant Dr. Haglund. We were hoping that Heath would not need any chemo while we were up here so he could have a break but the doctors told us that he will need to get the Etoposide/Ifosfamide chemo along with the radiation therapy. He was very depressed about that at first but has accepted it at this point. We also asked them to check his blood counts and to scheduled a PET scan. He had a pelvic CT scan and they scheduled him for an MRI, a platelet infusion and a PET scan for Friday and two units of blood on Saturday. His blood counts came back and they were very bad so we spent the rest of the day in the hotel room.

Friday Karis and Heath went over early to get his MRI. I went over and met Karis before he finished his MRI. Then we went over to meet Heath's new Oncology doctor, Dr. Ebb. He spent a lot of time with us and he explained everything to use extremely well and made us feel very good about being here. They gave Heath one unit of platelets. After that they took another blood sample to check his counts. Then we went over to get the his PET scan. His blood counts came back and they were much better except for his hemoglobin. The two units of blood he will get on tomorrow should take care of that. Dr. Ebb said that his blood counts are good enough for us to go back into tourist mode tonight.

Karis has a realtor scheduled to pick us up at the hotel tonight to show us a place that we may rent for the eight stay. Heath wanted to go to the Hard Rock Cafe in downtown so we will probably have the realtor drop us off there and take a cab back to the hotel after dinner.

I have several more posts that I need to catch up on and I'll try and do that this weekend.

Thanks for reading and please keep praying for Heath and for the doctors that are caring for him. To quote Heath's sister Karissa, "God answers prayers, please pray for Heath".

Joy FM 20 Wishes

Bill and Carmen from Joy FM were at our house today to grant Heath a very special wish. Listen for Heath and Karis on Joy FM 88.1 to hear the story. I will post more details, links and pictures later.

Thank you Joy FM and Melody.

Bull Riding at the Manatee Civic Center on 9/30/06

Bull riding at the Manatee Civic Center, http://www.manateecenter.org/support/events.cfm?ID=618 on September 30, Saturday night at 7:30. If you like bull riding, then don't miss it.

We went to this last year and it was awesome. We sat in seats that were 10 feet from the fence. It's a very big and sturdy fence but the bulls were bouncing off it right in front of us. There are bleacher seats for the less adventurous.

Some of the proceeds from this event are going the Heath's cancer fund.

We'll see you there if you go.

Details:
http://www.manateecenter.org/support/events.cfm
BullBash 2006
When: Saturday 7:30 pm - 10:30 pm, September 30, 2006
Sponsor: Red Hoagland GMC
Admission: Adults $20. Kids $10. (12-6) under 5 yrs. Free
Parking: $5
Contact: Doug Walker
Phone: 941-377-4780
Tickets Sold @ Manatee Civic Center, Alvarez Resturant, Crowder Bros Ace, Cracker Bay Country Store-Hwy 64, Red Hoagland GMC, Fruitville Feed-Sarasota, Come See Come Sav-Bradenton, Big "L"-Ellenton

Boston Trip is scheduled

I believe we are scheduled to fly to Boston on October 4th. Heath has his preliminary appointments on October 5th & 6th. They will be doing some scans as well as measuring him for some kind of mold that he will lay in during the radiation treatments. The purpose of the mold is to keep him stationary during the treatment.

Here is a picture from Massachusetts General

I'm not sure when we are coming back but it looks like Heath, Karis, Allan, and I will stay until the 10th or 11th. We will be looking for a place to stay and learning our way around during our free time. Heath will be starting the radiation on October 18th. I believe the four of us will be flying back up before that. That's it for now.

Last Chemo before Boston

Heath went back into Moffitt last night. They are delaying his chemo until today because his counts are still too low. He will be there until Tuesday night or Wednesday morning. The chemo is the same as the last time: Etoposide that they pump through him in one hour each day for five days and Ifosfamide/Mesna that they pump through in 23 hours each day for five days.

Heath had a couple of unscheduled trips to the hospital after the last time he received this chemo.

First, Two or three days after he came home the last time he went golfing with his friend Quintin. I was home working at my desk when he walked in the door. Allan yelled for me to come out because something was wrong with Heath. He was lying on the floor holding his chest over his heart in serious pain. He said he could barely breathe and he had very strong chest pains. In the next minute I called Karis and then I called 911. The fire department showed up about 30 seconds later (more like 2 minutes but there got here very quickly) and took his vitals. The paramedics showed up a couple of minutes later and did what looked like an EKG. She said that he seemed stable and she could not see any signs of a coronary problem. She then asked Heath which hospital he wanted to go to. He likes Lakewood Ranch so they took him there in the ambulance. The doctors ran his blood work and took a chest x-ray and a bunch of other stuff. I can't remember the exact diagnosis but it was some kind of muscle condition or pleurisy. They let us take him home that afternoon. We had called Dr. Agresta earlier while the paramedics were at the house and he said it was probably caused by his blood counts being too low. Later we found out the Heath's new friend Kyle (who we meant at Moffitt because he has the same cancer in his leg) had gone to the emergency room the day before with the same exact problem. Needless to say the whole thing scared me to death because I thought he was having a heart attack. Thanks to our local fire department and paramedics for their quick response.

Secondly, a couple of days after the fund raiser drawing for the car Heath started running a fever. The doctors told us to monitor it and if it went above 101 to take him to the local hospital to have his blood counts checked. Karis got up every hour on the hour that night to check his temperature. The next day she took him the doctor and his blood counts were very low and they said he had a neutropenic fever. Karis had to take Heath to Moffitt where he was admitted. They started him on IV fluids and I think IV antibiotics. His white and red blood counts were so low that they had to give him platelets and a blood transfusion. I was in Moffitt for 3 days while they monitored his counts.

It's very ironic but the day of the drawing for the car Dr. D'Amato talked to the crowd and told them that by looking a Heath that day you wouldn't know how sick he was but he is still very sick and all the crap that he is having to go through to try and cure him is very hard on his body. Like I said before, the trick is to poison his body enough where is kills the cancer without doing too much damage to the rest of him. Someday with places like Moffit discovering better treatments, people with cancer will not have to endure what Heath is going through. It is better today than it was ten years ago. But he is hanging in there pretty good and is staying positive which is all we ask.

The winning ticket

Congradulations to Mr. Kipp for winning the raffle. I believe the winning ticket number was 0012 which was draw by an employee of Red Hoagland Pontiac in front of ~150 people.

Karis commented that "Mr. Kipp has always given to others through community support, friends and family. When he read the flyer about Heath he immediately bought (3) tickets and his daughter bought tickets as well. He didn't think that we would win the car, but considered the cause. He says that he has never won anything before. He is so excited that everywhere he goes he shows the flyer."

We would like to thank everyone for helping out with this fund raiser. We would like to give special thanks to:

• everyone that bought and sold tickets
• Manatee River Community Bank for there endless support
• Red Hoagland Pontiac
• Larry and Donnas Arrasmith
• Sean Murphy of Arrow Fence
• Silent partner who didn't want their name mentioned
• Melody and Ralph
• Spotlight Graphics
• The Kileva Band (see pictures below)
• Eric Von Hanmann and Todd Cook for playing music
• Checkers the Clown
• Pyrates of the Gulf Coast of Bradenton
• Beth Frappier for all of the cans she decorated
• Doug Walker and the Bullbash Rodeo
• Dr. Gina D'Amato for all of her support
• Kim Zink with the Manatee County Sheriff's Department
• First Baptist Church of Palmetto and Buck & Vera Jo's Sunday School Class

The Heath Sammons Cancer Fund Drawing is today, 9-9-06

Join us at Red Hoagland Pontiac in Bradenton for the drawing of the car. The drawing will be at 1PM.


We will have free food and entertainment:

• Heath's band will be there to play a couple of their favorite classic rock songs.
• Eric VonHahmann's band has donated their time and they will be playing country music.
• Pyrates of the Gulf Coast make a special appearance and they will be there passing out beads to kids.
• Checkers the Clown will be there making ballons for the kids.
• Free hotdogs will be supplied by Red Hoagland Pontiac.

There are still a few tickets available so call Melody at 941-518-4047 or show up early if you would like to purchase a ticket.

Back at Moffitt on 8-31-06

Heath is back in Moffitt for more chemo. They have changed his protocol again. Instead of getting the Ifosfamide by itself they are going to give him another type of chemo at the same time called Etoposide.

He will be getting 5 full days of chemo. They started him on fluids last night at about 9PM. They started him on the Etoposide around 10:30PM. They pump that through him in one hour. Immediately following that, they start him on the Ifosfamide and pump that through him in 23 hours. This process is repeated four more times. They also give him Mesna which is mixed in with the Ifosfamide. It is supposed to counter one of the side affects of the Ifosfamide which can cause damage to the bladder.

The trick as we have learned for treating this type of cancer as well as many others is to basically poison the body enough to kill the cancer but not enough to cause too much damage to the rest of the body. The fact is that it does cause some damage. Keep praying that the doctors find the perfect balance.

In my previous post I did not mention something that the doctors told us. They said not to worry too much about the protocol change. However, if some of his previous symptoms with the nerve pain in the leg or foot returned then he would be more concerned. Last Thursday night Heath told us that he started feeling numbness in his foot again. We told the doctors and they wanted him admitted on Friday for more tests. So after being out for one day, Heath had to spend two more nights at Moffitt. They did a complete MRI, with and without contrast, on his pelvic and spine region. We are still waiting for the Radiologist to give us a full report on the scans. The intermediate results did not give us too much cause for concern. Heath did tell us that the numbness has come and gone since the beginning so we don't know if it is related to the tumor growing or not.

Protocol Change

The doctors want to change Heath’s protocol. They scan his tumor after each complete cycle of chemo and then compare that scan to the past scans. Then they review it all at there weekly tumor review board meetings.

The most recent scan showed that the part of the tumor that is in the bone is stable but the part of the tumor that is in the soft tissue is changing. They said not to worry too much because this is common but that it did warrant a change in protocol.

It goes without saying that we are worried but we are fortunate that they have the technology to see the changes so they can change the protocol accordingly.

They want to put Heath on a different chemo called Ifosfamide which is geared more towards soft tissue sarcomas. He will get two rounds of the Ifosfamide with a 2 week break in between. They also want to move the Proton Beam Radiation treatment up approximately one month. That should put us in Boston in the second week in October.

Dr. Agresta at Moffitt also sent the scans to Harvard so they can review them at their weekly tumor review board meeting.

Please pray for Heath and pray that this new protocol will shrink the soft tissue part of the tumor to nothing. Also pray for the doctors so they can make the correct decisions on Heath's treatment as well as all the other patients that they are treating.

Article in the Bradenton Herald today about Heath

There is an article about Heath in the local section of today's Bradenton Herald, Sunday 8-20-06.

Donna Wright came to our house several weeks ago and interviewed Heath. She also made several phones calls and interviewed some of the doctors over the phone, one of which was Dr. Letson. The article is titled 'Network' helps with teen boy's cancer.

If you are unable to buy a copy, here is a direct link: http://www.bradenton.com/mld/bradenton/news/local/15315962.htm

I don't think the link above shows pictures. The article in the paper shows three pictures of Heath: one with Allen and Mike, one with his dad Gary and one with his mom Karis and myself. If I can find the pictures, I'll try and post them here.

Back at Moffitt on 8/20/2006

Heath is back at Moffitt for Methotrexate chemo until Wednesday. He will only have a couple days off before he has to come back next Sunday for another round of Methotrexate.

Update

Heath is back home resting now. He just got home yesterday, 8/2/06, from Moffitt. He went in on Saturday. Karis's birthday was Sunday, guess what she wished for.

This round was delayed by a week due to his throat being very sore from the previous round of Methotrexate. This round was the Adriamycin & Cisplatin chemo, which is the beginning of his 4th cycle, so he is still very tired and a little weak.

During his time off Karis and I took Heath, Karissa and some of their friends to Busch Gardens. Heath also went fishing with his dad a couple of times. I'm not sure what they caught but they had fun.

Karis is trying to make arrangements for us to fly up to Ohio to visit her family, especially her Dad. He has not been well and she hasn't been up there since last October and the kids have not been up for 2 years. She needs to time it around Heath's treatments and doctor appointments. We are concerned with exposing Heath to the germs from flying on a commercial airline so Karis did a little research and found this info about CAIRFlight. Their "goal is to eliminate distance as a barrier to accessing essential medical resources or reuniting families in critical times". I'll put the link on this blog in case anyone ever needs something like this or if anyone would like to give them a donation.

Please continue to pray for healing for Heath and for his grandpa Bill in Ohio.

Quick Update

Heath is back at Moffitt for another round of Methotrexate. He was admitted on Sunday, 7/16/06, and should be home Wednesday night. This will be his 8th round of chemo and will complete his 3rd cycle.

He is doing ok. He's been sleeping a lot and his mouth/throat are getting sore again. They have put him back on the anti-fungal and anti-biotics to try and control it.

Heath will be back in Moffitt on Monday, 7/24, to start his 4th cycle. I think we are planning on taking him to Busch Gardens and meeting up with some his relatives that are down from Ohio.

Please continue to pray for Heath's healing. Also, pray for Colt's safe return from Italy.

Article in North River News about Heath

North River News
Manatee's Independent Newspaper June 29-July 5, 2006 VOLUME 16 EDITION 22
BY RHIANNON DeBAYLO Osteosarcoma (Bone Cancer)

"Watching 18-year-old Heath Sammons sit on his living room couch with his guitar on his knee and passion flowing from his fingertips, you may never realize that he is sick.
A seemingly typical teenage boy, Heath has a love for music, enjoys goofing off with his friends, and skateboarding. Ironically enough, it's a skateboarding accident that just may have saved his life.
In early January, Heath was skateboarding with friends when he took a fall that fractured his tailbone and ultimately brought about the diagnosis of Osteosarcoma, or more simply, bone cancer ..."

The entire article can be read at BuckandVerajosClass.com, Click here to see entire article.

Some freinds and family are heading up a fundraiser for Heath.

See flyer below.

For raffle ticket information, visit Manatee River Community Bank or contact Donnas Arrasmith at 224-7777 or Melody Sweetman at 756-2847. Checks can be made payable to the Heath Sammons Cancer Fund.

Goods news from MRI Scan

The tumor appears to be either the same size or slightly smaller but definitely not growing according to the doctors from a scan they did last week.

Heath came out of the last round of chemo better due to the all the antibiotics that they perscribed for him. He didn't get any mouth sores or sore throat and seven days out of the chemo he started feeling better.

He did have to make an unscheduled visit last week due to severe lower stomach pains. They scanned his digestive system and appendix. Karis also had them scan the pelvic area since he was scheduled for labs and a scan on 7/5/06. That way they wouldn't have to put him through another scan.

The scan showed an impaction which was causing the pains in the lower stomach, probably caused by the heavy antibiotics and not eating for five days during the chemo. He had to take some mineral oil and get back on the senokot. His white blood cell count was very low, 300 I think. He did get the Neulasta shot again after this chemo and on 7/1/06 he had another shot that they put him on to help with the blood counts called Aranesp. He will need the Aranesp shot every 14 days now because his blood counts have not been staying up where they should.

On 7/5/06, Karis took Heath back to Moffitt for labs. His white blood cell count was back up to 1200 which is a safe range. Karis and Heath got to look at the scans and compare it to the scan he took about 6 weeks ago, after the first cycle of chemo. They both thought that the tumor definitely looked smaller, Praise the Lord.

Proton Beam Therapy link added

Karis found this link, http://www.proton-therapy.org/index.html, so I added it to the links on the right.

Trip to Boston has been changed to November

I just wanted to let everyone know about the schedule change for the Proton Beam Radiation in Boston. It was changed to November 1st. That may change again since this last round of chemo was delayed by one week. It could be moved back even further if future chemo treatments are delayed.

I just wanted to post this quick update because several people were asking about the trip and didn't know the date was changed.

Back at Moffitt on 6/11/2006

Heath was admitted back in Moffitt on Sunday, 6/11, to start his 3rd cycle of chemo. This round is the Adriamycin & Cisplatin. This is the chemo that is very hard on Heath. He hasn't been eating or drinking at all but he is getting a lot of IV fluids to keep him hydrated. He has been sleeping or trying to sleep since Monday morning because he feels so bad.

He was supposed to go in last Sunday but this round was delayed because the two previous rounds of Methotrexate caused his throat to so sore that he could hardly swallow. The doctors put him of some very heavy duty antibiotics. After about a week, his throat started feeling better. He could have gone in on Friday but a bed didn't open up until Sunday.

Sorry I haven't been keeping this blog updated. I'll try and keep it updated better going forward.

Please pray for Heath to bounce back quickly after this round. Also, he is scheduled to get an MRI scan of the tumor before the next round starts so pray the chemo is shrinking the tumor.

Heath's visit to the Fire Station

Heath's dad arranged a visit to the Cedar Hammock Fire Station for Heath. Heath thought he was going to visit with several brave firemen and look at the new fire station. What Gary didn't tell him was that several of the guys from C Shift were going to shave their heads to show their support for Heath and what he is going through. You can see from the smile on his face that he enjoyed it very much.

The first picture shows Heath reluctantly starting the process and the second picture shows Heath, Gary and Peggy with 10 newly shaved firefighters from Cedar Hammock C Shift. I believe the pictures were taken on 5/4/06.

Thanks to the Cedar Hammock Fire Station for what you do everyday and special thanks to C Shift for your support of Heath.

Back at Moffitt

Heath was admitted back in Moffitt on Sunday, 5/28/06, to start a round of Methotrexate chemo. He should be home sometime Wednesday evening. He will only get a couple days rest and have to go back in from Sunday to Wednesday, 6/4 to 6/7, for another round of Methotrexate. That will complete his second full cycle of chemo. I believe they will do another MRI at this point to see if the tumor is reacting to the chemo.

Then on the following Sunday, 6/11/06, he will go in for a round of the Adriamycin & Cisplatin, which will start his third cycle. This is the chemo that is hard on him and he won't have any rest going into it because of the previous two weeks on the Methotrexate.

Please pray for results that the tumor is shrinking and that he gets through the next month without too much discomfort.

Heath's Story written by Karis (mom)

May 12, 2006


RE: HEATH www.heathsupdate.blogspot.com

On January 7th my son Heath fell skateboarding. From the beginning he complained of some pain, but throughout the rest of the month he began noticing the pain in his calf was getting worse. On Tuesday, January 31st, I took him to Dr. Scarano his pediatrician. He thought Heath might have Tendonitis. He prescribed some pain medicine which did not seem to help. A few more days went by and Heath continued to get worse. I called Dr. Sacrano and he referred Heath to Dr. Schafer a Sports Medicine Doctor. The appointment was on Thursday February 08, 2006, by now Heath was in a lot of pain. Dr. Shafer had Heath walk on his heals and then his toes and sent him for an MRI, he also put Heath on pain medication. When the MRI was done the Radiologist saw something other than fractures in the sacral bone. Heath was called back for a second MRI with contrast on Friday the February 10th. He then had an appointment with Dr. Schafer on Tuesday the 13th. Dr. Schafer showed us the MRI and said that he saw what appeared to be fractures, but he also saw something that was out of his field. He referred Heath to Dr. Tally a Neurologist for an appointment on Thursday the 15th. I asked Dr. Tally whether it was a blood clot or maybe inflammation. Dr. Tally believed that this mass was a tumor. He continued to keep Heath on pain med's along with steroids for inflammation which didn't seem to help. Dr. Tally told Heath that if the pain got any worse and if the medications at home were not working that he could admit him in the hospital for pain management.

Dr. Tally's next step was to order a biopsy. Heath immediately went to Manatee Memorial Hospital where they did a needle biopsy of the sacral bone. The results would not be back for at least a week or longer. The biopsy was tested and after a few weeks Manatee Memorial's report came back benign. Heath's pain continued to get worse and yet the second biopsy came back from Stanford University Medical Center benign. We were still waiting for the results from Mayo in Rochester, MN. While waiting for the biopsy results, I asked Dr. Scarano to refer Heath for a second opinion. On February 23rd we went to Moffitt Cancer Center in Tampa, Florida. Heath saw Dr. Douglas Letson the Program Leader for the Sarcoma Caner Program. He ordered x-rays of the sacrum and the pelvis as well as labs. Then on February 27, Heath had a bone scan full body and a ct lower extremity. Still the pain continued to worsen; the pain was coming from the S1 nerve coming out of the sacrum, which affects the sciatic nerve. The pain was nerve pain from inflammation from the fractures as well as the tumor compressing the S1 nerve. The pain began at the sacrum area and continued down the leg to his toes. After days of no sleep and uncontrollable pain, Heath finally decided to be admitted on Thursday March 2nd at Lakewood Ranch Medical Center. While in the hospital Heath was given Morphine Drip and Dilaudid, yet still the pain was out of control.

Finally on Monday morning March 5th, Dr. Letson nurse called and said that Dr. Letson had reviewed Heath x-rays, scans and labs. She said that he saw no visible signs of cancer and with the results from the biopsy's coming back benign that he would refer Heath back to Dr. Tally for follow-up. With relief in sight I waited for Dr. Tally to make his rounds at the hospital. He came in around 4:00 p.m. and to our surprise he had the results from the biopsy from Mayo. The results were Chrondoblastic Grade 3 Osteosarcoma (Bone Cancer) of the sacrum. I immediately called Moffitt and left a message with Dr. Letson and the next day Heath was transported by ambulance back to Moffitt for a second biopsy.

On March 7th Dr. Letson performed the biopsy taking bone the approximate size of a quarter, he also took about a cup of bone marrow. Once again the waiting continues. Heath still needed to remain hospitalized for pain management; the pain spasms were still constant. After working closely with the pain team Heath left the hospital with nine different medications. Finally on Tuesday March 14th Heath was able to go home. As the fractures healed Heath slowly discontinued pain medications. He started his first chemotherapy on Tuesday, March 28th. The first cycle of chemo consisted of Adriamycin and Cisplatin; he requires hospitalization for three to four days, with a Neulasta injection on the fourth day. The second cycle of Methotrexate was given three weeks later with hospitalization for three to four days. Heath has just completed another cycle of Cisplatin and Adriamycin the Neulasta injection will be given today March 12th. He is scheduled for the next chemo on March 26th with Methotrexate.

Heath has been accepted for Proton Beam Radiation Therapy. The tentative schedule for the Proton is sometime the end of October through the beginning of December. Dr. Letson referred Heath to Dr. Delaney at Massachusetts General Hospital in Boston. If Heath were to have surgery it would affect his mobility as well as control of his bodily functions. Because of the nerves coming out of the sacrum he would have some pain after the surgery. The oncologist at Moffitt consulted with Dr. Peter Anderson at M.D. Anderson in Texas. Dr. Anderson has treated several patients that have had very similar diagnosis. The protocol is that the majority of chemo is given in the beginning. Some chemo may need to be given during radiation and after. Heath should complete his treatments sometime in the beginning of 2007.


Karis
MOM

Karissa's Pinebox Derby Car

Karissa participated in Awana's Pinebox Derby Race at New Hope Baptist Church on 4/8/2006 (I met to post this last month).

She decided to build the car in the shape of a skateboard in honor of her brother, Heath. She earned a ribbon for participating and recieved a 2nd place trophy for Biblical Theme. It's a little hard to read the top but it says "Pray for Heath God Answers Prayers".

Very well done Karissa and you are right.

Second cycle of chemo

Heath was admitted back at Moffitt to start his second cycle of chemo on Sunday, 5/7/2006.

This cycle will consist of three rounds. This round will be the chemo that is hard on him, Adriamycin & Cisplatin. He should be coming home on Wednesday evening. We are hoping that he will tolerate this chemo better this time around because he is in a much better state then the last time he took it. He is completely off all pain medication and almost pain free.

After this round of chemo, he will get 2 weeks to recover and then have two rounds of the Methotrexate chemo to complete this cycle. At that point they will do another MRI scan to see how the tumor is reacting to the chemo.

Please pray that Heath will tolerate this chemo better and that the chemo will continue to kill the tumor.

Prom night

Heath, Allen and Emily on their way to the prom Friday night, 5/6/2006. They had a great time and looked good doing it as you can see.

Doctors Appointment at Moffitt on 5/3/06

Heath had an appointment on Wednesday, 5/3/06, to have an MRI scan to see how the tumor is reacting to the chemo and to meet with his oncology doctor about future treatments.

They didn't have an MRI scan of Heath just before he started chemo so they had to compare it to a scan that was taken several months ago so it was a little difficult for them to tell us exactly how the tumor has changed since he started chemo. From what they could tell us, it kind of appears that there are some dead cells around some parts of the tumor so that might indicate that the chemo is shrinking the tumor. They will take another scan after this next cycle of chemo, in about 5 to 6 weeks, to get a much better idea of how the tumor is reacting since they will have something to compare it to.

They are going to change the protocol for his chemo slightly. He will get one round of Adriamycin & Cisplatin and two rounds of Methotrexate per cycle over a 5 week time frame.

We are lucky to have the option to go to Boston and have Proton Beam Radiation but we are praying that the chemo alone will kill the tumor and keep us from having to go to Boston at all.

Heath, Live in concert with the "The Allen Lynchberg Experience"

Heath has been feeling pretty good lately. This round of chemo was not as tuff on him as the first round. He was able to practice with a group of friends ("The Allen Lynchberg Experience") enough to be able to perform at the annual Tiger Fest at Palmetto High School on Saturday, April 22, 2006. There is a whole other story behind the band name but I won't go into that. Heath commented that he can sing better and he could not hold or hit some on the notes that he normally can but the chemo did cause him to have a severe case of thrush. His throat was still a little raw but we thought he sounded great, and so did everyone else that was there. Here are a few pictures from the performance (sorry if the pictures look a little distorted, that's how they came off the tape).

Prayer request for Pastor Paul

Pastor Paul, the senior pastor at New Hope Baptist Church in Ellenton, is on the same floor that Heath was just on. He is in severe pain. They are still trying to manage his pain. They want to surgically install a pain pump that may control his pain. They were doing something yesterday that should determine if the pump will work on him.

Please pray that they are able to install the pain pump and that it will control his pain.

Up coming travel plans

We will be trying to work out the details for the trip to Boston for the Proton Beam Radiation Therapy. We don't know the exact dates yet but it should be around the middle of June.

Our biggest concern now is finding comfortable and clean housing for the 7 week visit for Karis and Heath as well as the rest of us as we come and go. Karis' concern is not splitting up the family for 7 weeks. I'd like to be up there as much as possible as well as bringing Colt and Karissa up for at least a few visits.

Please pray for our travel arrangements.

Home and resting

Heath's second round of chemo is over. This completes his first cycle of chemo. He came home yesterday. He has been having pains in his legs and left foot. He also has a very sore throat. Overall, he has tolerated this round of chemo much better than the other type of chemo.

Allan will be saying with Heath during his visit. That should help keep his spirits up. They are a funny pair.

Please pray for Heath's pains to lessen so he can recover from the chemo treatment more comfortably.

Heath's friend is in town for spring break visit

We picked up Heath's best friend Allan at the airport on Saturday. Allan is on spring break and will be here for the Tiger Fest that their band will perform at. Heath spent most of Saturday late afternoon and early evening playing video games with his friends Allan, Louie and Randy. Heath's dad Gary brought him the old Super Nintendo and they played Mario Brothers. Heath said that game is the best video game for therapy. They were laughing and having a good time for several hours. Heath has a lot of very good friends.

Second round of chemo

Heath was admitted back at Moffitt yesterday, 4/13, for another round of chemo. He will be given Methotrexate/Leucovorin during this round. The Methotrexate is given in an IV fast drip over four hours. They ran an IV previously for 6 hours that had something in it that will help keep the Methotrexate in his system for a 24 hour period. Leucovorin will be used to remove the Methotrexate. They will monitor the Methotrexate counts. When it goes below a certain level, Heath can come home.

This round will complete the first cycle of chemo. Heath will have one more cycle of chemo before we travel to Harvard.

There are 3 different kinds of chemo that they are giving him. Each cycle will consist of Adriamycin, Cisplatin and Methotrexate. The Adriamycin and Cisplatin are given during the same round and the Methotrexate is given in a round by itself.

Heath had the Adriamycin and Cisplatin on 3/28 to 4/1. This chemo causes the white blood cell levels to drop very drastically. A Neulasta shot was given 24 hours after this round as a rescue agent. It causes the body to produce white blood cells to keep Heath from getting an infection.

Thanks for all the prayers.

Good news

Heath was at Moffitt today. He had some blood work done and his counts were very good.

Also, we talked to Dr. Letson and he said he would call us as soon as he heard from Harvard about Heath's status for getting Proton Beam Radiation Therapy at Harvard. Before we left the hospital, Dr. Letson called to tell us that Heath has been accepted for the Proton Radiation. This is what we were praying for. From what we have been told, this is the best possible treatment that he can get for this type of cancer more many reasons.

Thank You Dr. Letson

Heath got his braces off

Heath got his braces off yesterday. He had them on for 2 1/2 years. His teeth look great and he can eat more confortably. The chemo has caused him to develop sores in his mouth and the braces were not helping the matter. Many thanks to Dr. Morrish for working him in.

History of earlier events

I have been meaning to post a thread that gives some of the past events that lead to where we are at but haven't had time. I will edit this post with that info in the near future.

Note: See post on 5/12/2006 for updated history.

Heath's Diagnosis

Heath has been diagnosed with Chondroblastic Osteosarcoma in the sacrum.

On 3/8/06, an incisional biopsy was performed on the left sacrum area by Dr. Letson. The pathology was prepared by Moffitt. It was reviewed by Moffitt, Harvard and the Mayo Clinic in Rochester.

On 3/20/06, we were told that the pathology was showing that Heath has Chondroblastic Osteosarcoma.

On 3/21/06, a PET scan was performed at USF's University Diagnostic Center. The results from the scan showed that the cancer has not spread to any other parts of the body.

On 3/28/06, Heath was admitted back at Moffitt. His first chemo treatment was started late that evening and lasted until about 2AM on 4/1/06.

His strength and appetite are coming back slowly.

Keep praying for his healing and strength.

Song that Karis found and wanted posted

"He's My Son" by Mark Schultz

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

CHORUS

Can You hear me?
Can You see him?
Please don't leave him
He's my son

Heath's Update

Please keep Heath in your prayers. Pray for healing and strength for Heath and his family.

This blog has been setup to help keep Heath’s family and friends updated on what is going on.

Sometimes it is hard to remember who we have talked to and who we still need to call. This will also allow Karis and Heath to fellowship with most of the people calling without having to give them an update first. Also, this will help keep all the facts straight. We all remember the childhood game that we played called Telephone.

Links to this blog will be posted on our Sunday School Class Website, http://www.buckandverajosclass.com/. Heath may also post this link on his MySpace.com site. The direct link to this blog is http://heathsupdate.blogspot.com/.

Please keep Heath in your prayers.