Way too long

I can't believe it has been nearly 2 months since I last updated this! Well, there is a lot to say. I'm going to start off with our sad news first. Recently we lost a dear friend, Charlie Ellis. If you go back to the post on 9/18/08, you will see that I spoke about meeting a nice couple at Troy's first chemo treatment. Charlie is the man that I was speaking about. We kept in touch with them and kept up on how his treatment was going. Unfortunately, the cancer went from Charlie's lung to other parts of his body and then made it's way to his brain causing him to die. We had just visited him in Douglasville a few weeks prior to the phone call that his wife made to us saying that he had brain cancer and that hospice was at the house. It was a really nice visit. The kids had a good time visiting and Jerri, Charlie's wife, gave them a couple of collectible cars to take home with them. We can't say enough about how Charlie and Jerri took away so much gloom back on September 17th. They were so warm and friendly and talked about everything other than cancer. When you are in that chemo room, you are surrounded by chairs and people receiving treatment. You sit there and wonder what everyone's fate might be including your own, but Charlie sang and he talked about chili dogs and he temporarily took our fears away. Jerri was so giving. She let me know where I could get coffee and when I dropped my sandwich on the floor, she offered me hers. What can I say except that we will miss Charlie and so will a lot of other people that he touched. He is definitely making people smile up in heaven. And our thoughts and prayers are to Jerri and to all of Charlie's friends and family who are missing him.

Our boys have started school. Derek is in his 3rd week at Kennesaw Elementary and Ryan started at St. Catherine's Preschool yesterday. Derek has full days while Ryan goes from 9-12 just on Tuesdays and Thursdays. It was a very sad day yesterday. I hung around the "crying room" with some of the other moms who were concerned about their babies. Ryan was good right up until they went to take him out of the car from me and then he clung to me and started crying. This broke my heart tremendously. Needless to say, I do believe he enjoyed the day even though it was scary to him at first. A few more times and he should be a pro - and me too!

Anyway, Troy has been doing well. He just had an appointment at Dr. Riley's (the ENT) yesterday and all looked well. He will be going for his PET scan next month and if Dr. Goldsweig sees it come back clean, he said he would be moving him to every 6 months rather than every 3 months like it is now.

We have been busy getting the kids ready for school. We were able to meet Mr. & Mrs. Blackbird, from back home, for lunch at a Cracker Barrel recently. They dropped down from Tennessee after they had been visiting friends there. We were able to have lunch with them and their friends, so it was real nice to visit with a piece of "home". We also recently visited Chatanooga one weekend and then went to the Smokies, near Gatlinburg, the following weekend and stayed in a cabin owned by Steve Pridmore (a friend that we grew up with in Whitehall). It was nice to go to Tennessee and get away with the kids. Well, Ryan is tugging at me right now to get off the computer, so I'm going to hang out with my little guy and write again later.

3 month PET scan clean!

We are happy to report that Troy had good results from his PET scan that he took on Tuesday. He saw the doctor this morning and doesn't have another scan for 3 more months. Troy is doing really well and we are doing well also. The stress we feel before the results can't match the relief that we feel after we have had a good report.

Derek celebrated his 5th birthday here at home with a group of friends and their parent/siblings on the 23rd of June. Batman came and there was fun had by all. I included a couple of pictures for you to see. We have been to several different outings with friends or just events that have been organized by the Mom's group in our development in order to keep ourselves busy. Derek is also doing gymnastics on Friday mornings. He continually says that he hates it before we have to go and then when we get there, you can hardly wipe the smile off his face as he is jumping around. Ryan is entering the terrible 2's in a big way! He seems to listen to Daddy better than Mommy, but isn't that usually the case? He was real sick last week and had a high fever that lasted for 4+ days. He got over it, but not without a trip to Urgent Care and a catheter up his penis! There was no urinary tract infection and they have decided that it was just a nasty virus. Poor Ryan!! He is just as cute as ever and becoming quite the talker. We can just about recognize everything that he has to say.

Troy will be on vacation in another few weeks and we will probably take a little trip to Tennessee. He sees Dr. Riley next week for his monthly check-up. We'll keep you posted.

Father's Day

Father's Day is going well and has a lot more meaning to it this year. It is 500 degrees outside with the humidity, so we are staying in - not to mention that I have a sinus infection that is making my head feel like a pressure cooker. Troy has prepared his Father's Day meal because he is a good husband who feels bad for his wife. We did manage to make it to the Waffle House for breakfast.

Troy met with Dr. Riley at the beginning of this week for his monthly visit and everything still looks fine. The picture above is of Dr. Goldsweig with his Mickey ears that we brought back for him from Disney. Karen, also in the photo, is his head nurse. Dr. G., if you are still reading the blog, no offense, but I can't say that we miss you all that much. Not coming to that office on a regular basis is the best medicine that Troy has had yet! We will see you next month though and we do look forward to saying hello. Troy has had some pain still, but is doing much better and seems to improve very slowly. He has his PET scan coming up in the beginning of July and is naturally nervous. He looks great though for what he has been through.

Derek is turning 5 on Tuesday and has Batman coming to his party. He is ultra excited. We have been very busy every week since school got out. We try and come up with somewhere to go each day. We have been to a firehouse tour, the lake, the movies, Centennial Olympic park, and to other local parks and play areas meeting up with friends here and there. He has had some playdates with old classmates which he really enjoys. Unfortunately the heat is coming and we don't do well with the GA summer temperatures so we will have to find some indoor activities along with the pool. Derek is doing gymnastics on Fridays and Ryan wants to do ANYTHING that big brother is doing. I have Ryan signed up for St. Catherine's Preschool 2 days a week (3 hours each day). This will be interesting when it starts in August. I don't know how he will do without Mommy, but hopefully he will do well. We are off to a good start to the Summer. Troy is on vacation this week and we look forward to spending it together as a family.

Post Surgery

Troy's surgery went very well on Monday. He worked from home on Tuesday and then went back into the office on Wednesday. He only took a pain pill once. We went to Audrey Egitton's graduation party yesterday. Joe, Audrey's dad, works with Troy, and Sharon, Joe's wife, has helped us out a few times here at the house when we needed someone to watch the kids while we were at doctors' appointments. It was a really nice time. Derek and Ryan had a busy week. Along with playing with the kids at the party last night, we had a full week of play dates - once with William (a friend from Derek's class) and we met up with Blake, Gabriel, & Olivia at the park nearby (also friends from Derek's class). We also took a trip to the airport for a tour. Derek had his last gymnastics class on Friday, but we signed him up for a more advanced class for the summer. Derek is begging me to get off the computer right now so he can play on Kidzui - one of his favorite computer spots! We are loving this long weekend even though it has been rainy.

Surgery tomorrow

Well, we survived Disney! It was a wonderful trip, but as it goes with 2 young children, it was a lot of work and we were happy to be home. We had a really busy week last week. Troy had a few appointments. He had one with the ENT for his monthly visit and Dr. Riley said that he has one of the best looking throats around. He went to the dentist on Wednesday and Dr. Friedrich said that everything looked great. Troy doesn't have any cavities or damage from the radiation and his saliva is pretty productive. Troy feels like his mouth is pretty dry though. He also had to go to the hospital for blood tests on Thursday because he has his surgery tomorrow to remove his chemo port. Besides Troy's appointments, Derek had his skills testing Monday morning for his entrance to Kindergarten. He had an appointment on Tuesday to see the allergist. There isn't much to report except that Derek has a propensity to hives. They don't test for allergies to sorbitol and the doctor thinks it is highly unlikely that this is what his allergy is to. He wants him to take Zyrtec every night and Troy and I aren't so sure we want to do that so we are just waiting for the next allergic reaction. He has only had a few outbreaks in 5 years so we really don't think it warrants medicating him at this point. Derek also had his end of the year party on Thursday and his graduation on Friday. One of the pictures above is of him with his teachers, Miss Cassi and Miss Betsey. The other picture is Derek with 2 of his best friends, Alex and Gabriel. We are very proud of him. He has come a long way in this past year. He is more outgoing than he has been in the past and he has learned a lot at preschool academically. He is ready for Kindergarten!! Anyway, it has been a busy couple of weeks and now that summer is kicking in, we will be spending a lot of time at the pool and doing fun things around Atlanta. We'll keep you updated on all the happenings. We will let you know how Troy's surgery goes tomorrow as well. Thank you in advance to Marian and Torie, my friends and neighbors, for helping us out with the kids.

Heading to Disney!

Derek with his hives!!

We are getting packed and ready for our trip. We will drive to Orlando early Saturday morning and be back on Saturday the 9th. We're so excited to go and Troy said that he isn't even going to look at his phone! Troy has been doing really well. He has been going into work like he used to do before his diagnosis. He started on Monday of last week and has been doing it pretty steady. He stayed home Thursday to work from home, but besides that he is up and out the door by 7am. He struggles a little with his eating and wishes he could just enjoy food the way he used to. We will be going to Cobb Hospital on the 18th to have his port removed, so he will have to recover from that, but all in all things are really a lot better. My sister, Tonya, stopped by with her family while vacationing around the South. She was only here for a couple of hours, but it was so nice to see a piece of New York/family. Olivia, Christopher, and Logan (the cousins) are shown above with Ryan and Derek. Derek has only a couple of weeks of school left. He finishes on the 15th of May. He will be going to Kennesaw Elementary's Kindergarten orientation tomorrow. Ryan is signed up for the Fall to go to St. Catherine's Preschool on Tuesday and Thursday mornings. Derek went to the doctor (and the hospital) last weekend for hives. He was on all kinds of medicine for 5 days and he is going to the allergist on the 12th. I actually think he may have an allergy to sorbitol. It's a long story, but he had an allergic reaction a couple of years ago and we linked it to fluoride tablets that he had taken with that inactive ingredient in them and this past reaction I found the same ingredient in some frosted animal cookies that he had chowed down. We'll see what the doctor thinks. Anyway, he is doing fine and his reaction, luckily, was just cosmetic (not to mention he was extremely itchy) and didn't affect his breathing or anything. We have a week of doctor's appointments when we return from vacation. Troy has to go to the ENT Monday for his monthly visit, Derek sees the allergist Tuesday, Troy goes to the dentist for a post radiation visit (who knows what damage the radiation may have done), and on Thursday, Troy sees Dr. Knauer for his pre-op visit. Ahhhhhhh, vacation is only 5 days away!!! We will leave the chaos behind us for a week.

Complete Remission

Troy had his appointments with Dr. Goldsweig and Dr. Riley on Friday. His MRI showed up clean once again and everything is looking good. Troy is still having a hard time sleeping, but everything else is picking up finally. Thanks so much to Sharon Egitton (and Joe and Lauren) for coming to the house on Friday to keep Derek and Ryan company. They had a blast and we really appreciate you helping us out.

Today we will be going to see Dr. Knauer, the general surgeon who installed Troy's port. This appointment is for a consultation to remove the port. I'm assuming we will schedule the appointment for the surgery to remove it as well. Also, tomorrow, Troy will be going to see Dr. Osborn and he will have his feeding tube removed - YAAAYYYYY! He is so excited to have this removed.

The clouds are beginning to part and the sun is definitely starting to come through in our world. We are heading to Disneyworld on May 2nd through the 9th for a family celebration. We can't wait. We hope everyone had a nice Easter/holiday.

Starting to eat solid foods

Troy has had a good week and a half of trying solid foods. He can handle softer foods with some struggle. It still hurts, but the healing is definitely starting. Troy went for his MRI on Friday and we get the results this Friday. He hasn't had any appointments otherwise since the last post. We have scheduled an appointment with Dr. Osborn to have Troy's PEG tube removed before our trip to Disneyworld on May 2nd. We're anticipating good news this Friday. Keep us in your prayers.

Derek is registered for Kindergarten (I did that on Wednesday). He has his 3rd T-ball game today. It's a make-up game since all it has been doing around here lately is raining. We took the boys to the Eggstravaganza yesterday and they had a good time hunting for eggs, seeing the animals, and getting up on the fire truck and getting in the police car.

The pollen is awful this time of the year and for those of you up North who have never experienced it, the cars get yellow with pollen dust. Everyone is washing their vehicles around here - it's like the road salt and dirt on the cars up North during the Winter. It's pretty wild. Luckily, none of us seem to have allergies, so we are faring well.

We will let you know how Friday goes.

Post Treatment Issues

Since February 27th everything has been pretty good. Troy is struggling with the length of time it is taking for his body to heal from the radiation. He's frustrated to say the least. He has only had 2 doctors' appointments since the last post - one with Dr. Riley and one with Dr. Machuta (she is one of the radiation oncologists that rotates at Dr. Allen's office). Dr. Riley just sees Troy on a monthly basis for the next year and he checks down Troy's throat to make sure everything is going as it should. Dr. Machuta walked in and said to Troy, "Let me guess, you feel like..." and she basically rolled down every symptom and feeling that Troy was experiencing at this point. This made Troy feel better knowing that this is the way he is supposed to be feeling - like crap! He has been going through a little bout of depression (which seems to have subsided over the past week). He just said that he wakes up and just relives the nightmare of the pain, feeding himself through his PEG tube, and pouring his medicines through the PEG also. He can't wait to get it removed. In fact, we were supposed to leave for Disney tomorrow, but we pushed it back to April 18th and then pushed it back again to May 2nd in the hopes that Troy would feel a lot better and he would have the tube removed by then. Keep your fingers crossed for us!! Anyway, Dr. Machuta gave Troy a steroid to take which will help the swelling in his neck. She said the biggest side effect of the medication is irritability which just makes me laugh... you mean he's going to be more irritable!!!? Great. We're doing well and the kids are doing well and we're looking forward to a vacation. Speaking for myself, you have no idea how much.

SUPER, GREAT, EXTRA HAPPY NEWS

Troy got his results today and the MRI findings were clean. The doctor classified Troy back into remission and we can breathe again! The doctor's orders were this: Troy has been mandated to take a vacation somewhere where they deliver drinks to us on the beach. We are looking into that and hope to make plans very soon. Although Disneyworld will be a nice break, it still won't be the same as some tropic island somewhere in paradise.

We are so happy I can't even express it. Troy has another MRI ordered on April 3rd and follow-up with the doctor on April 10th. He has a follow-up on March 6th with Dr. Riley, the ENT. He has another follow-up with Dr. Allen, the radiation oncologist on March 18th. I will probably update this blog on a bi-monthly basis while he is just going for follow-ups. And come April, I hope to update this on a quarterly basis if all stays well (which we intend it to!!). Other than that, I hope to change the title to this blog to: The Brooks Family and only have pictures of the kids posted and keep you updated on how Derek is doing with school and how he and Ryan are growing and how we are doing with life and not cancer!!

Thanks to all of you who have supported us so tremendously. And.... a very heartfelt and SPECIAL thanks to Dr. Goldsweig and his staff (especially Karen, Candice, and Ginger). They gave the best hugs this week when we so desperately needed them. They hugged when we were upset after the results on Tuesday and they hugged when we rejoiced over the wonderful news today. Also, Susan pushed Troy's MRI through quickly so we wouldn't have to wonder and agonize over the weekend. And Marian, our neighbor, cried with us over the great news after watching our kids for 3 1/2 hours while we were gone and she brought over an awesome pot roast so I wouldn't have to worry about cooking. It was so tasty, Marian! Dr. Riley and Dr. Allen were so wonderful in getting right back to us on Tuesday with their thoughts when we were so upset thinking something else could be wrong. And our families and other friends and colleagues just listened to us when we needed them to or read our blog and commented that they were thinking of us - and that was more than enough. Troy's parents gave up their lives to stay with us from August-January. And Brian Hill, the founder of the Oral Cancer Foundation, who doesn't even know us personally, but has taken the time to answer our questions and open his cell phone line to us, we thank you. I've thanked so many people before, but you can't know how much we truly appreciate everyone who has been beside us in one way or another during this extremely difficult time. We have even seen kindness from strangers who didn't know us at all. Thank you from the bottom of our hearts and God bless you all.

And, Troy, thank you for my birthday present. You said you didn't know if you could give me what I wanted. I knew you'd come through. I love you so very much.

MRI completed

Troy had his MRI yesterday afternoon and we will be going to Dr. Goldsweig's tomorrow morning. The kids will be watched by our neighbor, Marian, and we can't thank her enough for helping us out!! We'll let you know what we find out from the doctor. On a more positive note, Troy has spoken with Dr. Riley, the ENT, and Dr. Allen, the radiation oncologist and they have painted a more positive picture of the outcome. We take everything with a bit of skepticism however and we won't know the next course of action until tomorrow.

PET scan

Troy had his PET scan this past Thursday. We met at Dr. Goldsweig's today and unfortunately he didn't have great news. There is a small abnormality on the opposite side of Troy's neck where he had the original surgery. His lymph node on the left side shows as if it is slightly larger than normal. There is no way to know what it is from the PET scan so they are ordering an MRI for Troy so they can have a better look. At that time they will make a determination as to whether a biopsy is needed or not. We are praying for the best and hope that this is nothing more than something that is a result of the radiation. We'll keep you informed. As you can imagine we are in a somber state right now. Troy has been worrying since he had the PET scan on Thursday. I don't even want Troy to get a paper cut right now, let alone have to have another surgery. All we can do is hope and pray right now.

Doctor Appointments

Last Friday Troy met with Dr. Riley, the ENT, and he stuck the scope down his throat and confirmed that it was all burnt up in there. His quote: "Good for me... not good for you." Troy still is too sore to consume food just yet. We're hoping he will feel up to eating in the next couple of weeks. He saw Dr. Allen, the Radiation Oncologist, yesterday and she didn't have anything too uplifting to say - just basically that it is a healing process and it takes time. Today Troy went to the oncologist's office and met with Brandon, the Physician's Assistant. He thought that Troy's neck looked really red (which it does). This seems to be a little bit of an anomaly it seems, but every day it seems to get a little better and the redness seems to fade. Troy is still tired a lot so we try to let him rest the best that we can. He has been trying to go into work once or twice a week for the past few weeks. He hasn't even been doing a full day because it tires him out quickly right now. He does best working from home where he can stretch out on the bed with his lap top there and a phone by his side. We planned our trip to Disney for March 21-28 so we are hoping he gains some energy back in the next couple of weeks.

Today's appointment

Troy saw Dr. Goldsweig today and will be getting a PET/CT scan in another couple of weeks. We have to schedule it with the hospital. The doctor said we can start to return to a normal life and it will take some time for things to truly return to normal. His immune system will always be a little off due to the torment that his body has taken. Troy is extremely burnt on his shoulder/neck area and is in a lot of pain with that. His tongue/throat is still extremely sore from the radiation as well. He has tried a bite of food here and there, but still can't bear the pain of it as of yet. He'll keep taking baby steps toward getting his feeding tube out. Unbelievably, it is just torn out of his stomach when the time comes to take it out. We're not kidding about that either. The gastro doctor says it's about 15 seconds of sheer pain and then it's over. It takes about 4 hours for the stomach to heal and for the oozing to stop. I know, Iknow... completely gross - sorry! The scar tissue will form and then he is as good as new. The feeding tube was so necessary. He was able to maintain and actually gain weight throughout his treatment which is one of the reasons why he has done so well. The doctor is having him be an advocate to his patients in promoting the PEG tube surgery and Troy has offered his support to any of the center's patients who may need it. He knows Hal Mendel has been great support to him throughout this ordeal and he wants to offer the same to anyone who may need it.

Radiation Completed!!

Today was a milestone for Troy. He has finished his radiation treatments. Troy had an appointment with Dr. Goldsweig this morning and then we all met at the radiation center at noon. Derek was picked up at school an hour early by Grandma & Grandpa and Ryan and then they met up with us at the radiation center next to the oncologist's office. Hal Mendel met up with us too so he could join in our celebration and it was truly a special day. For those of you not following along, Hal was cured of the same type of cancer last year and he has been great support for us (and especially Troy) throughout our ordeal. Hal convinced Troy to keep his radiation mask so we have that souvenir. It's a grim reminder of what we have been through over the almost past 6 months, but it also reminds Troy of what he was able to conquer. We have an appointment next week with Dr. Goldsweig and I believe they will be setting Troy up with his 3rd PET scan at that time. We will just hold onto faith that everything will be fine. Feel free to keep the prayers coming! I will let you know how we make out and I will continue to let you know how Troy is progressing with his eating and energy. A good sign is that Troy told me to check out travel plans for Disneyworld with the kids for the end of March. Joanie & Dickie - We are still considering meeting up with you at Disney in the middle of February, but we aren't sure that Troy is going to feel up to it in just 3 short weeks. Hang on to the hope that he will and I will hold off on booking anything for March until he knows for sure.

27 down 8 to go

Troy is doing well. There's not a lot to report. His tongue is the most painful part of his body right now. The treatments have caused various ulcers to form all over it and it is just killing him. His throat is sore and he has occasional bouts of nausea. He feels tired a lot because he can't sleep well at night and the treatments are causing fatigue. I know it must sound like he can't be doing all that well with everything I'm listing, but comparatively speaking he really is blessed. I have heard stories of other cancer patients being hospitalized because of their side effects and I have seen other patients in the chemo room at Dr. Goldsweig's office who don't look well at all. One of them was taken away by paramedics. We're thankful that Troy can start his recovery process soon and we will continue to let you know how things are going.

Derek's Move-A-Thon

Happy New Year everyone! Troy is doing pretty well. He had nausea last night and got sick, but he tries to hold back on taking his phenergan sometimes and I think that causes issues for him. He also started a fentanyl pain patch last night and that might have done it, but I don't think it even had time to enter his system before he got sick. He is doing well though and is still above his normal weight by a couple of pounds. He only has 13 treatments left (less than 3 weeks to go now!).

The sheet to the right is for sponsoring Derek's Move-A-Thon that he will be participating in at the end of January which will raise funds for his Spring Fling event at the end of April. If you can donate any small amount, Derek would appreciate it. Let me know by sending a comment to this post or emailing me directly at soothcage@bellsouth.net. I will catch up with you for the money at a later date. Thanks for your support!