Live Life to The Fullest!!!!!

Well Thomas did 3 rounds of the new chemo (doxil and cisplatin and temodar) He did okay with the chemo, it caused several side effects! He got this Painful reaction on his hands called hand/foot syndrome, his hands were VERY swollen and bright purple, and very very very painful! he also got a rash all over his back. On August 8th thomas went to the U of U to get a CT of his chest and a MRI of his brain, on August 10th we went back to get the results and to start round 4 of chemo. The dr came in and told thomas the results from his scans, and they were not good!! He said that 2 of his tumors in his chest got bigger (he has a total of 4 in his chest) and all of the tumors in his brain got bigger, plus 3 more tumors showed up, so he now has tumors in his brain. He dr said that Thomas has exhausted all of his options and there is nothing more they can do for him. He said he will be turned over to Hospice care, and to live life to the fullest! Since that news, Thomas has kept a very positive attitude, he tells me daily that hes not giving up and hes going to keep fighting! We have been having lots of fun together, and enjoying every second we have together! Thomas knows that this is what god planned for him, and although we dont understand it right now, one day we will know the reason behind it, but we know everything happens for a reason! We have started funeral arrangements, We picked out our plots at the cemetery and we will be buried together. We also pick out his casket and various other funeral arrangements! Thomas continues to be strong, he says that he would never change anything about this journey because it has made him a stronger person and has a different outlook on life. We continue to enjoy our days together, Thomas has to take it easy because he gets worn out very easily and his legs and feel get very swollen!!
We want to thank all of our friends and family who have stood behind us and supported us this entire journey! We could not have done it without you all!! I love you Thomas Kammeyer, always and FOREVER!!! You are my rock!!!! Keep fighting!

Chemo!!!

Well, Thomas had a 6 week break after radiation, and then the dr wanted to do another scan to see how the tumors responded to radiation. The scan showed that the Brain tumors responded to radiation and shrunk slightly, and some of his chest tumors shrunk and some grew. So the dr wanted to tell us what our next option was, he said chemo! He said thomas would be doing out patient chemo for 5 days every 3 weeks. Day 1 he will get a 6 hour IV chemo called Liposomal doxirubicin (spelling) and also a chemo called Cisplatin and then he will take a pill at home called temodar. Day 2 AND Day 3 he will get a 4 hour IV of the cisplatin chemo and take the temodar at home, Day 4 and 5 he just does the Temodar at home. The temodar pill is for the brain tumors, it is suppose to cross the blood brain barrier and get to the brain tumors. Thomas got his port placed back in a week before he was suppose to start chemo, and then the following week he was suppose to start, but then he got shingles and so his chemo was post poned 2 weeks. His first round of chemo was June 8-12, his 2nd round of chemo was June 29- July 3rd. And he will start his 3rd round of chemo on July 13th. After every round of chemo, thomas has small seizures. They are not nearly as bad at his first seizure. These seizures he is fully conscious the entire time and he can feel when his seizure is about to happen. He will feel his arm start to tingle, it starts in his hand and works its way up to his brain, once it reaches his brain his arm starts twitching and jerking, that part is the actual seizure. We have medicine that is suppose to break the seizure, so these small seizures only last about 1 minuet. Hes had 11 of these small seizures since his first round of chemo. He is following up with a neurologists and she said these small seizures do not cause any brain damage, so that's a good thing! Since the chemo is getting to the brain it could be irritating the brain and causing these seizures. Today is July 9th, yesterday thomas woke up and had SEVERE head and neck pain, and he was starting with a fever. I gave him some Tylenol and it broke the fever and he was able to rest and felt a little better. Later on in the day his fever returned, this time it was higher and he was having the head and neck pain again. So we decided to take him to the U OF U, we got there at 8:00pm and they got us into a room at 9:00 pm. The drs came in and wanted to do a brain scan and wanted to do blood work. They did blood work and it came back positive for a blood infection. The dr was concerned that he may have meningitis and he wanted to do a Lumbar puncture. He wanted to get the brain scan first, so he did that and we waited for the results. The dr came back in about a hour later and told him that he has MAJOR swelling in his brain and that it would be unsafe to do the lumbar puncture. So instead they wanted to admit him to Huntsman to start on heavy antibiotics! He was admitted to Huntsman at 6:00am.. it was a very long night for us! Thomas is still in the hospital and receiving antibiotics. They are still trying to determine to source of infection. Hes feeling pretty well and he should be released from the hospital either on the 10th or 11th. Thomas will start chemo again in 2 weeks and then after this round of chemo he will have a chest CT and a Brain MRI to see how the tumors are responding to treatment. We ask that you please keep thomas in your thoughts and prayers and pray that this chemo will work! The drs have told us that this is really his last option and that they most likely will not be able to fully get rid of his brain tumors because of the size and how many tumors are in his brain.
Thanks for every ones love and support!!!!

Pictures!!!

***Please read the next post for an Update on Thomas***




His Port Scar


Hes SO cute!!




Thomas's Radiation Mask






Radiation tattoos, The circles are not tattoos,
just the tiny dot inside the circle.


Thomas and Duke (our baby)

Where do i begin....

So i know i said i would be better at updating... obviously i havent. Lots has happened... Back in December we did a fundraiser for Thomas through this amazing organization called Anything for a Friend. We had a GREAT turnout. It was so awesome to see sooo many people there who love us and support us! We had a great committee and we couldnt have done it without them!
On January 13th Thomas finished 8 rounds of chemotherapy.. He was only suppose to recieve 6 rounds because the Doxirubicin chemo is very hard on peoples heart, but they did a echocardiagram on his heart and it looked great, so they made the decision to do 2 more rounds. Thomas handeled the chemo very well, with very few side effects. He never did get nauseated like most people do going through chemo. He got a little tired, and he got a couple of infections. Around the end of January Thomas started having really high fevers! We didnt know what was causing these fevers. We went to the dr, they did an exam and said he looked great. They though maybe it was because he wasnt getting enough water. So we started increasing his fluids, but he was still getting fevers. On January 28th thomas had a chest Ct scan. Dr Gouw wanted to see how the tumors responded to the chemotherapy, He said the tumors improved in size and were shrinking!! He said he talked to the surgeons and they dont feel comfortable yet doing surgery to remove the tumors because some of them are still pretty large! So he said he wanted to wait 6 weeks, do no treatments, and see if the tumors are stable, or if they grow.
On January 31st, thomas had a fever of 104.2!! So, we called his nurse and she told us to come in for Blood cultures to see if he has some type of blood infection. So he got cultures done and we went back home and waited for the results. They called us the next day on February 1st and told us he has an infection in his port! So they admited him to the hospital, he was put on very strong antibiotics, and they told us his port would need to be removed. So the next day his port was removed. It was a very quick procedure. He was just numbed up with Lidocaine and they made a small incision and out came his port! He ended up coming home from the hospital on February 3rd.
So then we go back to have another Chest CT scan on February 25th after the 6 week break of no treatment. Dr. Gouw said that the tumors didnt grow!! We were very shocked that even with NO treatment for 6 weeks they didnt grow any! In fact, the 2 large tumors actually SHRANK in size!!! He has at least 4 tumors in his chest, here are the current sizes of the tumors:
Right Apex Mass- 10mm (Started at 18X16mm)
Left Upper Lobe Mass- 15X14mm (Stareted at 16x15mm)
Right Upper Lobe Mass- 56x48mm (Started at 59x51mm)
Left Lower Lobe Mass- 79x74mm (Started at 99x93mm)
So the tumors are still shrinking, and showing improvement, but are still too large to remove. So Dr. Gouw suggested we have a consult with the Radiation Dr. So we schedueled an appointment with Dr. Hitchcock (the same dr he saw last year for radiation) We met with her and she agreed that radiation would be the next step. They said he would need 15 treamtments of radiation. We go to radiation Mon-Fri for 3 weeks. He started radiation on March 16th.
The first part of march, thomas was having problems with his left arm going numb. It was doing it several times a day. So we told Dr. Gouw about it, he did an exam and since thomas didnt have any movement loss he decided to just keep an eye on it. Well it kept getting worse and never got any better. So after he started radiation, we had an appointment with the radiation Dr. and we decided to let her know about the arm problems. She decided to order a brain MRI just to make sure everything was okay. So on March 18th we went into Huntsman to have the MRI. We get done with the MRI and went home. We were only home for maybe 2 hours when the Dr called.... Thomas answered the phone and i could hear the dr say "Im sorry but your cancer has spread to your brain" It was so hard for me to hear that news, i lost it. I immediately started bawling, i had to call Thomas's mom and my mom to let them know the news. The dr told us to immediately come down to Huntsman to discuss our options. So we head back down to Huntsman. We get there and the dr showed us the MRI scan, there are AT LEAST 5 tumors in his brain, 2 of them are very large. She told us he has alot of swelling around the brain, which was causing his arm problems, so she started him on a steriod to help reduce the swelling. The figure the tumors have been growing a very long time. But he never noticed any symptoms before now, and we think its because, the symptoms will start happening when there is swelling in the brain, and the steroid will get rid of the swelling and the symptoms. And the ENTIRE time he was getting chemo, they were giving him the same steriod because it helps the chemo absorb better. So now that hes not getting chemo, hes not getting the sterioid, and so now the brain was getting swollen again. They told thomas he would also need 15 radiation treatments on the Brain. He started radiation to the brain that day.
On March 26th at 8:30 am, i woke up to Thomas yelling "OW MY ARM, MY ARM, MY ARM" So i jumped out of bed and looked over at him, his arm was crippled up and was twitching, i ran out of the room to grab my dad, we come back in the room and all of a sudden Thomas started shaking all over. He was having a seizure. His entire upper body was shaking and twitching. That lasted for abour 3 mins. Then after that, he was unresponsive for 10-15 mins. His eyes were WIDE open just staring off into space. We shined a flashlight in his eyes, and he didnt even respond to that. Finally after about 15 mins he started coming back. He started blinking, we asked him who i was, but he said he didnt know. A few mins later i asked him again who i was and this time he was able to tell me my name. I called the dr and he told us to take him to the U OF U ER. So i told Thomas we needed to go to the ER. He was so angry, so didnt know what had just happened. I told him he had a seizure and that he needs to go to the dr to be checked. He was so mad and thought i was making it up. I handed him some socks and he wouldnt let me help him put them on. He insisted on doing it himself, except for he couldnt do it. His arms and hands were still really crippled, and he would try to put his socks on but he wasnt even near his feet. He couldnt understand why he wasnt able to put his socks on. He got angry and gave up, he laid back down in bed and said that he was going to sleep. I told him that he needs to let me drive him to the ER or i was going to call the paramedics and they will take him to the ER. He didnt want that, so he finally got up and let me help him put his pants on. We got into the car and about 5 mins later he started asking questions about what happened. He wasnt angry anymore. I told him what happened. He said he doesnt remember any of the seizure, but he remember yelling about his arm, and then he remembers my dad coming in and that was it. They did a Brain CT in the ER to make sure there was no bleeding in the brain, and there wasnt. So they sent him to Huntsman to stay in the ICU for a day, they put him on the anti seizure medicine Keppra. Its been 2 weeks today since his seizure, and he hasnt had another one. And i hope he doesnt have another one. Hes had a few side effects from the Keppra, but nothing too bad.
He finished his chest radiation on April 5th and his Brain radaiation on April 6th. We also saw dr gouw on the 6th. The next step is to wait for 6 weeks and the repeat the Chest CT and the Brain MRI. He may need more chemo to the chest and more radiation to the Brain.
Well thats it for now, i will update again after we find out the results in 6 weeks! Thanks to everyone for the continued prayers! We love you all!

Update!!!

So i really need to be better at updating....... Quite a bit has happend since last time... Thomas got a feeding tube put into his stomach, it has really helped him! His weight has finally leveled off and he isnt loosing anymore. Thomas has had 3 rounds of chemo.. after round #2 the drs did a CT scan of the chest to see if his tumors were shrinking. The dr came in the room and said "Unfortunatly there not shrinking" So the chemo wasnt working, which wasnt a huge suprise to us cause we were kinda expecting that.. So we asked what plan B is, he said that he wants to try a newer form of chemo, its been around for about 6 years, he said he would get those chemo treatments once a week for 3 hours each time. So they sent us over to the infusion room to wait to get hooked up to the new chemo... they were just about to get started when the Dr came RUNNING into the room!!!! He said "Thomas, i have some good news" We were anxious to hear what he had to say, he told us that the radiologists compared his scnas wrong and that the chemo WAS acutually shrinking the tumors a tiny bit, even a tiny bit is a progress!!!!! So he said he wanted to stick with the origional chemo and try that for two more rounds and then do another scan. So they admitted him up to the 4th floor and he was there for 5 days getting chemo! He handles chemo pretty good. He doesnt get nauseated much, thank goodness!! Other than being tired he doesnt have any other side effects. We try and keep him out of the public for a week after chemo, his counts get really low and we dont want him to catch anything. The drs put him on antibiotics just as a precaution so that he doesnt get sick. Well on Monday (Oct. 11) He went in for round # 4 of chemo and the drs noticed that the sore on his chin looked much worse, it has been draining alot more, so they looked at it really good and cauterized it.. when the dr was cauterizing it he saw some puss squirt up into his mouth.. so the drs were looking into his mouth to see why it would have done that and they found a pretty big hold in his gums!!! So thats why his chin keeps getting infected!!!! The dr did NOT want to start chemo since he had an infection. So instead they admitted him to the hospital and placed him on strong IV antibiotics and told us that they will not start chemo again until the infection is cleared up! Thomas was in the hospital for 3 days, and then they sent him home with the IV antibiotics, he will have to be on the antibiotics for 2 weeks, and then the drs will look and see if the infection looks good enough to start chemo again. We really hope the infection clears up soon!!
Also, some exciting news, Thomas is working with an organization called "Anything for a friend" They are going to do a Fundraiser event for Thomas on December 11th! The organization has been very sucessful!!! They have helped 4 people so far this year and have raised over 100,000!!! Check out their website at www.anythingforafriend.com Hope we will see you all at his event!!! I will update again soon!!

Scentsy Fundrasier!!!

Hey Friends and Family!! We are doing a Scentsy fundraiser to help with Thomas's Cancer treatments. You can place your orders from September 11th-18th. You can either place your order with me, or you can go to www.acosper.scentsy.us and there will be a link on the left side that says Thomas K Fundraiser, click on the buy from party. If you place your orders online there is a $5.00 shipping fee. Please contact Jordan Kammeyer via facebook or call me to place an order or for questions (801)628-2043 I will also have all the sample scents at my house if anyone wants to come over and smell them. We all love scentsy so this is the perfect time to buy since its going towards a great cause!!!

Comedy Funraiser!

Hey Friends and Family!!! Wiseguys Comedy Club in Ogden (269 Historic 25th Street) is having a Fundraiser comedy night for Thomas. Its $15.00 at the door, per person and that includes: The show, Dinner and Drink. The doors open at 6:00pm and the show starts at 7:00pm, the show is about 1 1/2 long. All proceeds are donated to Thomas to help him with his Cancer treatment. This is a family event so people of all ages are welcome to come, small kids are free. Please feel free to email me at tom_jo_kammeyer@hotmail.com with any questions! Please come out and support Thomas!!!!!

Where did my hair go???

Thomas finished his first round of chemo on the 13th of August. He got really sick, couldn't eat, kept throwing up, and he was really tired all the time. On August 19th he had been having chest pains throughout the day, around 8 pm they were getting worse, so i took his temperature and he had a fever of 102.00!!! So i rushed him to the ER. Once we got to the ER were told them what was going on, and the dr said the wanted to get some blood work and a couple scans, so they came in to get blood cultures, and then they took him to get a chest x-ray and a chest CT scan. The dr came in a little bit later and said his white blood count was very low, it was 0.3.. where a normal blood white count is 3.0-5.2.. so his was low!!! The ER dr called the on call dr at huntsman and told him what his levels were, the dr at Huntsman wanted him admitted to their chemo floor asap!! both the xray and the ct scan came back normal with no findings. So we left the ER at 2:30am and drove to SLC. We got to Huntsman a little after 3am.. the Dr came in and said the plan was to get him on strong antibiotics for several days to get him counts up! So he was in the hospital for 4 days, he was released on the 22nd. In the hospital he wasn't able to eat, he got sores in his mouth, and he kept loosing weight. So the drs decided they wanted to put a feeding tube in, So the nurse came in and put the tube in. It was pretty intense to watch, it wasn't complicated or anything, but it just kept making him gag, and made it hard to breathe when he was gagging, his feeding tube goes through his nose and into his small intestines. He now is at home, he gets hooked up to the IV feeding machine at night, he gets fed 5 cans over a 12 hour period. were trying to get him up to 9 cans but right now his stomach cant handle it. And yesterday was two weeks since his first round of chemo, and his hair started falling out today!! So a few hours ago he shaved his entire body!!! Thomas starts his second round of chemo on Aug 30th!! Enjoy the pictures! I will update again after round 2!!

The start of Chemotherapy!!

Ok so lots has change since last time. We met with the new Dr. His name is Dr. Gouw, he is amazing, he is probably my favorite dr so far!! He is so nice!!!! Dr Gouw wanted to do a full body scan to see if his Cancer spread anywhere else, The results came back and it has NOT spread anywhere else, thank goodness!! And also he wanted him to get a biopsy done of his tumor in his lung to see if it is still Sarcoma. So he had the biopsy done at U of U, they sedated him and he had to lay on his back and they went through his back and into his chest to get the biopsy, he was only suppose to stay at U of U in recovery for 2 hours but during the biopsy his lung collapsed a little bit and so they needed to keep a close eye on him, so we ended up being there for 5 hours. The biopsy results came back and it is still Sarcoma, which sucks in a way because Sarcoma is more difficult to treat, but its good in a way because then there isnt a second type of cancer to deal with. Thomas had to get a port placed on Monday the 2nd. The port is used during chemo, and its also used to get blood. When he got his port placed they told him he would start chemo in one week!!! So we wanted to go on a little vacation before he started chemo, so my parents took me and thomas to VEGAS!! We were there from Aug 3rd-6Th... Thomas has never been to vegas before so he really enjoyed it!! So he started chemo on monday the 9th and today is friday the 13th and he goes home today. He has done really well through chemo, so far he hasnt had any side effects. He is doing great. He is really enjoying the free room service at Huntsman, he can call them anytime he wants and they will bring him whatever he wants! He has about 6 iv bags hooked up to him, 2 of them are the chemo, i have pictures below of the iv stand, but i took the pictures today and the chemo bags are already gone so i dont have pictures of those, i will get some next time. When they bring out the chemo they have to wear suits and gloves because they said its very harmful if it gets on your skin. He has so many fluids going in to him and so he has to go pee alot, which he isnt use to cause at home he never ever goes to the bathroom during the night, and now here at the hospital he goes 5 or 6 times a night. Thomas gets to come home today, and then he has to start treament again on Aug 30th. They said 7-10 days after his chemo treatments is when it gets scary, they said his bone marrow and blood cell count gets really low and so they have to have nurses come to our house and check on him, they said his immune system gets very low and he has to be really careful about going into public so he doesnt catch any germs. They said he can bleed alot easier, they dont even want him flossing his teeth because it could cause him to bleed. Check out the pictures below (also a few pictures from vegas!) I will post again next time!

Im Back!!!

Ok so i know its been forever since i last updated.. where should i start.. On my last post thomas finished radiation, since then, alot has happened.. he keeps getting infections in his face, where the tumor was, and it has been draining for the past two months, we have made several trips to Huntsman for the infection, the dr have prescribed two different kinds of antibiotics for it, they have cauterized it, and they even did a CT scan of his face to see if there was an abscess. Thank goodness there was no new growths in the mouth. The newest antibiotic has been working for him. And his face is now less swollen and its not draining much anymore. So hopefully the infection is finally going away!!! Thomas also had a CT of his head and neck to check for any new cancer, there was no new cancer in the head or neck but when the looked at the neck CT they could see some growth in his chest, and since we knew that Sarcoma can spread to the chest, we were really concerned about this, and so was the doctors, he wanted Thomas to get a chest CT asap, so we had an appointment for the next day.. so we went back to huntsman, got the CT scan and then waited for a week for the results. I started a new job and so i wasn't able to go with Thomas to his appointment, so Thomas mom and his sister went with him. I told Thomas to call me at work when he was done with his appointment, i was very anxious waiting for the call, and then finally he called me... it wasn't good news. He said the cancer HAS spread to his lungs and there are 4 tumors in his lungs. Dr. Bentz said he will need to see a new dr for the new tumor since its in his lungs, and Dr. Bentz only deals with head and neck cancer. Dr. Bentz said that Thomas will most likely have to go through Chemotherapy for this cancer, but he also said there is no chemo out there that has been proven to treat Sarcoma, so he said that he will be put on a "clinical trial".. that makes me a little nervous but i guess its better than not having anything done at all. Thomas has an appointment with the new dr tomorrow, the 26th of July, and again i cant be there because i have to work. I'm having a hard time not being there for him, we have alot of support from friends and family so he wont ever have to go alone, but i wish i could be there for him... Also, Thomas has lost 111 lbs since January.. he is so skinny now. so i thought i should post some pictures so you all can see! Well i think that's all for now, i will update again after his appointment tomorrow! Love you All!