Long Overdue Update...

I can't believe we haven't provided any updates since July! So sorry for our laziness...

Things in our lives have been amazing and we continue to be surprised at all the blessings that come our way on a daily basis. Since the update about Brad being in remission as of July 16th, many wonderful things have happened.

The best news of all is that Brad continues to become stronger everyday! Although cancer continues to be part of our daily conversations, we don't talk about or make predictions on when his first relapse will occur. His hair has fully returned and is almost black now. He also just seems to have a heck of a lot more of it! We are certainly looking forward to this Christmas being so different and much happier than last year's.

In August, Avery went to spend nearly a week at Camp Kesem, which was sponsored by the University of Richmond at Westview on the James camp and retreat center. Although he was nervous to spend the time away from home, we were looking forward to his opportunity to interact with other kids his age who can directly relate to his feelings about dealing with a parent who has cancer. As did the camp staff, all campers had to choose nicknames and Avery affectionately became known as "Mashed Potatoes", but shortened it to "Taters" throughout the week. It was clear when Brad and I picked him up the day of the family picnic, that Taters was extremely popular at camp and found significant value in his experience. Avery's favorite activity during the week was the zipline and surprising to us all - he LOVED singing the camp songs and performing in the talent show. He led the kids and camp staff in a dance he created called the "Mashed Potato Shuffle" and his group became known as the "Mashed Taters and Gravy Crew." He is still talking about his experience and wants to return next year.

After some significant conversations with Brad and deep soul searching, I made the decision in July to resign my position with the YMCA at Virginia Tech at the end of August. I didn't have another position lined up and was unsure of what the future held, but truly just wanted to be closer to home after all that we have endured since last December.

After applying to a variety of positions and doing some temp work, what I considered to be the most wonderful opportunity presented itself in August. I applied, had many interviews and was offered a position as the Office Manager for the American Cancer Society's South Atlantic Regional Office here in Roanoke. Much of what I do is administratively based here in Roanoke, yet also provides support and direction to the other 5 offices within the region. I still have the wonderful opportunity to interact and serve alongside volunteers, provide mission based experiences to my own staff (i.e. retreat, professional development opportunities, etc...) and more importantly, work with an incredibly talented team of professionals who are clearly dedicated to serving others in the fight against cancer. Although I just started this week and have a ton to learn, I am thrilled to have found the opportunity to work for another action and impact oriented organization committed to making a difference in the lives of others.

I continue seeing blessings and miracles at work in our lives daily and am so thankful for being led down the right path. Many continued thanks to our friends and family who still reach out and support us in more ways than we could ever mention. We love you all.

Hugs,
Sandy

REMISSION!!!!!!!!!!

Yesterday was a HUGE day for us when we found out that chemo has been a success for Brad and he was officially declared to be in remission. He had his PET scans earlier this week so it has been a week full of emotion thinking through everything...over and over and over again. Brad is excited to have his chest port removed on Friday, July 23rd. I honestly think he's just looking forward to being waited on hand and foot again.

I am trying to avoid thinking about how long it will be before his relapse (we have been prepared that this will happen - just a matter of when) will occur. I have to be honest - it's tough. Really tough. It makes "remission" bitter sweet, but time to put the past 7 months behind us and put our energy back into our jobs and getting life back in order.

I am so proud of Brad - his strength, his commitment, his humor. He is honestly the man that I was meant to spend my life with and my life continues to be blessed by God. Although I have always been spiritual, in the "non-spiritual" sense of the word (you know, be a good person, be kind to others, etc...), this experience has truly been life changing for me...for us, really.

Much love and many thanks for all the support,
Sandy

Round 6...Ring the Bell!

Sorry we have been absent for so long! I have received messages from some of you wanting to know how Brad's last chemo session went and we are so sorry that we haven't taken time to blog about it.

Brad's last session was scheduled for Tuesday, June 8th and the session came and went as they normally do. This session was much more emotional than we expected not only for us, but for the Oncology staff as they wished Brad good luck in his recovery. There were tears shed by everybody (except Brad of course!) as he rang the bell at the end of the day, signifying that he was finished with this phase of treatment. Here are a couple of pics...

The picture above is Brad with the wonderful Oncology nurses that have truly been a wonderful support for our family during this journey. From left to right, we have: Linda, Susan, Brad, Roseanne and Teresa. Each of them have been INCREDIBLE!

Brad ringing the bell!!

The Sunday before chemo, Brad started feeling a little sick and on Monday he developed a fever that we were quite worried about. Thankfully, Blue Ridge Cancer Care called in an antibiotic, we were able to get his fever to come down by Tuesday and he was able to have his last chemo session as scheduled. Unfortunately, the combination of chemo and the illness that had set in prior to chemo, were not such a good mix. As Brad struggled through the week, although trying to maneuver bursts of energy from his excitement of his last session, his body became weaker and weaker despite the fact he had continued to take his antibiotic and some sinus/allergy medicine, along with his normal regimen of prescription drugs.

The morning of Monday, June 14th, Brad woke up with a rising temperature that went up to 100.8. For most folks, this wouldn't be a big deal, but we were told early on that if Brad ever had a fever that got to 101 degrees, he needed to immediately go to the emergency room because it could signify an infection that could easily get into his blood. Because of the worry, we went to the ER about 4:00am. Thankfully, it's pretty quiet that time of day and Brad got right in. Within 2 hours, because of Brad's low white blood cell count (which is expected after chemo), his obvious illness and him throwing up in the ER, he was immediately admitted for the next two and a half days.

Although I was somewhat relieved that he was at the hospital getting the care that he needed, Brad had a significant drop in his white blood cell count on Tuesday, nearly dropping his immune system to non-existent. He was raised in status as a "high risk patient" and was limited in the number of visitors. In the event that Brad left his hospital room, he had to wear a mask to limit his exposure to germs. Additionally, Brad couldn't have any plants or flowers in his room (or at home) and could not eat fresh fruits or vegetables due to the risk of exposure to toxins that could be harmful to him. Having a visit from an Infectious Disease Doc, was a new twist for us. Thankfully, Brad did not have a bacterial infection, rather just something viral that he needed plenty of time to recover.

On Wednesday, Brad's Dr. said that although his numbers were still low, he was going to release him from the hospital, but that he needed to be quarantined from groups of people through the remainder of the week and still avoid the fresh fruits and veggies. Although I was nervous about Brad coming home, he did better than I expected following Dr. Fintel's orders and checked work email from home, while getting lots of rest, etc...

Early this spring, Brad's parents gifted a week at one of their timeshares to us for a family vacation. We intentionally planned it a few weeks after Brad's last session, to give us something to look forward to. This Saturday, we will leave to go to St. Augustine, FL for a week and cannot wait. We have been more anxious than ever to get away and really spend some time as a family reconnecting and not thinking about cancer as one of our daily primary thoughts. Another wonderful surprise to our trip is that our really good friends Chad and Cathy were able to get us passes at Sea World! Brad, Avery and I are so excited, that I'm not kidding when I say most of our bags are already packed!

We have several more big days ahead of us. On July 13th, Brad will go back to the hospital for his PET scan so we can figure out whether the chemo worked (Brad says he can "feel that it did"). On July 16th, we meet with Dr. Fintel to get the results of the PET scan and hopefully schedule Brad's surgery to have his port removed from his chest.

Although we recognize that this will be a life long journey for us, we have faith that will help pull us through and the confidence in an incredible medical team. Without the support of family, friends, our new church and employers, I cannot imagine where our lives would be right now. Thanks to each of you who have kept us in your thoughts, prayers, cooked/brought us meals, and so much more. We love all of you tremendously.

We will definitely keep the blog going and will update especially when Brad gets a good report on July 16th! Thanks again to each and every one of you!

Love to you all,
Sandy

Healing Begins...

Lyrics from the song "Healing Begins" by a Christian group called Tenth Avenue North have completely hit me in the spot during the past couple of weeks and I felt the need to share them. The song is part of the music that plays in our blog - it has a catchy little tune! As we get closer to Brad's final round of chemo scheduled for Tuesday, June 8th - it's hard to know what the future holds for us. So many wonderful, yet scary things ahead...

So you thought you had to keep this up
All the work that you do
So we think that you're good
And you can't believe it's not enough
All the walls you built up
Are just glass on the outside

So let 'em fall down
There's freedom waiting in the sound
When you let your walls fall to the ground
We're here now

This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within
The light meets the dark
The light meets the dark

Afraid to let your secrets out
Everything that you hide
Can come crashing through the door now
But too scared to face all your fear
So you hide but you find
That the shame won't disappear

So let it fall down
There's freedom waiting in the sound
When you let your walls fall to the ground
We're here now
We're here now, oh

This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within
The light meets the dark
The light meets the dark

Sparks will fly as grace collides
With the dark inside of us
So please don't fight
This coming light
Let this blood come cover us
His blood can cover us

This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within
The light meets the dark
The light meets the dark

Round 5...

The past several weeks have been beyond crazy for me from the work perspective, requiring lots of time away from home and longer work days. In addition to winding up a semester of planning and implementation for the YMCA's week long, Ytoss? campus recycling program, I am now on the last day of hosting the 2010 Coalition of Campus YMCA's national conference, an event that began a week ago, but has been being planned for the past year. While it has been an incredible conference, I am thankful that conference duties will end later this afternoon.

Our conference officially began on Tuesday, May 18th, although the planning team arrived on Sunday, May 16th when we checked into the hotel where we are staying for the conference to start getting things ready. Brad's 5th round of chemo took place on May 18th - yep, conference start date. In my heart of hearts, I knew I needed to be with him at the hospital on Tuesday and I was, however, I continuously wondered what was happening at the conference, what things I would be troubleshooting if I was on site and how the students were doing managing the conference check-in, etc... As usual, they were AMAZING! I feel so blessed to have the opportunity to see impact in action on a daily basis - the team was phenomenal and handled conference challenges with dignity and grace.

If you read the last post after Brad's 4th chemo session, you know he did quite well. Unfortunately, this round has been his most difficult to date. He has experienced more than usual tiredness (sleeping 17-20 hours a day), lack of energy, etc... and I wasn't at home to take care of him. On Monday night when I arrived at home to spend the night for chemo on Tuesday, Avery pulled me aside to let me know that he was really afraid he wouldn't be able to take care of his Dad while I was not at home during the week. It completely broke my heart and of course caused an extreme flood of tears. We hugged a lot and I told Avery he had been doing a great job taking care of his Dad the two days I had already been gone, but he insisted it was because chemo hadn't happened yet. Avery continues to be the most thoughtful, sensitive and understanding child ever. We are so very, very fortunate that he is so helpful - I look forward to the time when chemo isn't constantly on our mind or on our calendars.

Knowing that this week was so tough for Brad, it has been full of emotion for me. I have randomly broken out into tears more times than I could count during the week and have been heartsick not being around to care for him. Yes indeed, this has been the most difficult session for both of us. Thankfully, with the conference being only 45 minutes from home, I have been able to visit and check in with him briefly during shuttle runs to the airport on two occasions. Despite their brevity, it was wonderful to be home. Thank you Mom and Dad for all the help you have provided this week, the meals you have brought to Brad and continuously checking in with him. Your availability is what has given me the ability to slightly relax during the week as much as possible.

For those of you who know me well, I am not so good at asking for help. Right now, I am asking for your help through prayers of strength. I have several personal and professional challenges before me that I will need much strength to overcome. I'm confident I will not be given more than I can handle, but the question certainly becomes one of how do I handle it best?

I have been filled with sadness and fear over the recent decision that Jen, one of my YMCA co-workers who has become my friend during the past four years, will no longer be working for the YMCA as of the end of this month. Unfortunately, the economy impacts non-profit organizations (maybe even harder ) than any other "business" and her full time position has been eliminated. She is an amazing woman filled with many, many skills and talents and I feel confident that she will find another rewarding position. Unfortunately, her loss will impact my office, our student volunteers and me quite deeply. I am so fearful of my ability to continue meeting the expectations of others, while also meeting my own during this adjustment.

Through all the challenges, Brad and I continue to have the support of so many friends and family and recognize that we are blessed in so many ways. Thank you for keeping us in your thoughts and prayers.

Love,
Sandy

Round 4...

Wow...I really can't believe it has been so long since we've written to all our friends and family - things have been so busy and a great deal has happened in the past 3 weeks. This past Tuesday (April 27th), Brad had his 4th round of chemo. Other than his exhaustion and nausea, we never know what to expect as far as his side effects go. Sometimes some food/drink items taste badly, other times they are fine. Sometimes he gets mouth sores and hiccups, sometimes he doesn't. It's very strange.

This round has seemed to be relatively calm and it's great to see Brad doing so well in the grand scheme of things. My emotions have mostly been in check the past few weeks, but the bigger issue this round is that I started feeling crummy on Wednesday. By Thursday, I felt like I had been run over by a semi and literally spent the majority of the day in bed. On Friday I went to the doctor out of fear that I would make Brad sick while his immune system is so compromised and then promptly returned to bed for the rest of the day. I was tested for mono and strep and thankfully both tests came back negative. I was told that I have what the Dr. is officially referring to as the "crud" (which doesn't sound so official to me). She said it has the symptoms of both mono and strep, without having either and that I should expect to feel kinda crummy off and on for the next 4-6 weeks. I'm hoping this is some kind of misdiagnosis. While I have more energy than I have the past few days today, I'm definitely not 100% and the best part now is that Avery has it. Ugh...we're taking extra precautions around Brad and getting as much rest as we can while it's the weekend.

So I mentioned that the past few weeks have been busy. Although much of it has been work related, on April 9th, I received a phone call from one of my dearest friends from the past. Sheri and I go back to when I was about 12 years old and she was my Youth for Christ Big Sister where I grew up in Michigan. Sheri now lives in Tennessee and we reconnected through Facebook (CRAZY!). She had been following our blog and asked if she and Betsy, her oldest daughter could come for a visit. I hadn't seen Betsy or Sheri in about 15 years! We had the most amazing weekend together, definitely what I have been referring to as "soul food." This was Sheri's first time meeting Brad and Avery and her first time participating in Relay for Life. I have to admit, I was nervous to see them, but as soon as the nerves wore off, it was like no time had passed at all. Avery has decided that he has a little crush on Betsy, despite the fact that she has a serious boyfriend. Strangely enough, the picture with the three of us together, didn't turn out so well - but here's Sheri and Betsy:

Relay for Life was such an emotional event for me this year. Brad's Mom and Dad came and this was their first Relay also. Avery, Brad's Mom and Dad, Brad and I all participated in the survivor lap to kick off the event. I think I cried the entire time. Avery was so proud of all of his laps and even wrote on a board about why he relays - here's a pic of what he wrote:


You probably can't read it so well, but Avery wrote "My Dad has lufuma" (and signed his name). He then went back to the sign and wrote underneath it: "Gone green for Brad" and signed the board again. I loved his spelling of lymphoma. Avery was quite emotional this year also - it's amazing how much he "gets" it as an 11, almost 12 year old. Trying to put a smile on my face during the event, he went and purchased a beautiful necklace from one of the fundraising tables at Relay for me. It was so thoughtful. He was adorable - he came back to the YMCA tent and said that he bought something for me while sharing that he spent one third of the money that he brought to spend throughout the night. Yep, it was the kindest, most heartfelt $5.00 anybody has ever spent on me. I have worn it several times and Avery notices it each time I do.

We have much to be thankful for and only two more sessions to go. We pray for a long remission so that we can put the thought of Brad's bone marrow transplant on the back burner for a while. We are continuously finding ways to feel more connected at our church which feels really amazing.

We have several friends who have been recently diagnosed with cancer and/or are facing medical and personal challenges.
Jilli - know that you are always in our thoughts, in our hearts and minds and in our prayers. I know returning to your chemotherapy regimen this week will be exhausting, but I have faith in you!
Mike - we are praying for you and your family with the hopes that the insurance challenges are somehow answered and that the tumors were discovered in time to prevent amputation.
Jeanne - girl, you need to stay out of the hospital and get yourself well so that we can see each other soon! I love you.
Sheri - I know that we have been reconnected for a reason and a purpose. I have faith that the challenges that have been laid at your feet will be met with grace and dignity.

We are keeping each of you close in our thoughts on a daily basis and will ask for extra strength during such challenging times.

Much love to all of you,
Sandy

Round 3...

It's hard to believe that Round 3 took place yesterday, officially marking the half way point in Brad's fight. It is my deepest hope that when June arrives and Brad completes his 6th and final cycle he will be in remission.

Avery is on Spring Break this week so he came to Brad's session again yesterday. Little did we know that Avery snuck his little friends Dinkles (the blue bunny) and Streaks (the leopard) into his bag so that his Dad would have something to cuddle with during chemo. Brad was absolutely thrilled and pretended to LOVE the animals, as you can see in the picture. We have NO idea where Avery gets the names for his stuffed animals, but there they are in all their glory!

We returned to the hospital again today for Brad's $7,985 Neulasta shot - that's the one that helps raise his white blood cell count. Just being out for a short period of time wiped him out all afternoon.

Yesterday and today have been horribly emotional days for me. Once I start crying, I simply can't seem to stop. Brad is so physically and mentally worn down, which of course he doesn't want others to believe. It makes me so "down to the bones" sad. Today was the first day since Brad started chemo that when I looked at him he actually looked beyond exhausted. He has tried to stay awake much of the day so that he can sleep through the night and only use his sleeping pills when necessary. I sometimes feel like I want to lock myself inside the house and pretend none of this is happening. A bigger fear is that I don't want to leave Brad's side while he recovers from his sessions. The feelings of being a horrible employee, housekeeper, friend, etc... are all deeply embedded right now and I don't quite know how to make them go away or feel like I am effective at any of my roles right now.

Brad found out about this really cool kids camp called Camp Kesem from someone on facebook. "Kesem" is the Hebrew word for "magic" and the camp is offered at several colleges and universities around the United States. After doing a little research, we found out that the University of Virginia and University of Richmond are two schools who offer this camp here in Virginia. The camp is a free, one week sleep away camp for kids who have a parent who is currently facing or is a survivor of cancer. When we talked to Avery about it he was SO excited about maybe going. We have done the initial paperwork for Avery to attend camp in Richmond, so please pray that he is accepted. As an only child, it would be so amazing for him to connect with other children who are dealing with some of the same emotions. It would also be a wonderfully therapeutic outlet for him and allow him some time to be a kid.

This Friday night is Relay for Life at Virginia Tech. Although I anticipate this year's event to be a highly emotional one for me, I look forward to walking in honor of Brad and having Avery right next to me each step of the way. I'm hoping Brad can gather enough energy for a quick appearance, but if not, we will relay with him in our hearts and as always, on our minds.

Hugs,
Sandy

Bumpy Road...

The past couple of weeks have been a little tough which is part of the reason we haven't written much. Sorry for keeping you all in the dark!

I realized two days into Brad's second cycle that I had been giving him the wrong amount of his steroid, which included the time period when I gave it to him during his first round. He was supposed to get 5 tablets daily for four days after each session. Unfortunately, I had only been giving him one tablet for four days and for some reason, my brain started thinking about the tremendous number he was prescribed on day 3 of his second cycle. I felt like a HORRIBLE caregiver! The steroid is to help his body fight infection and to get stronger after chemo. Thankfully, Brad didn't get sick after his first treatment. We were so prepared for the big "crash" the doctors kept telling us about, but it never happened the way we envisioned. Remember a few entries ago I mentioned that everything went better than we expected? Well, blame it on me not giving enough meds - good thing I don't work in a hospital.

After realizing my mistake, Brad did take the correct amount for his last two days and then had the crash we had originally been expecting. After he started recovering from his exhaustion, Brad unfortunately got sick with another horrible cough, which he has now had for about a week and a half. We're getting a little better about not calling Dr. Fintel for every little thing (which I'm sure he's thrilled about), but I did call this time around because Brad was feeling so poorly. I didn't ask for an appointment, just a refill on the antibiotic that he was given in December/January when he was sick. I wish it would have worked! We'll see Dr. Fintel again on Tuesday though so we figured we could maybe kill a couple of birds with one stone then.

Brad has only had a couple days of energy during the past 3 weeks, but has managed to work through a chunk of it. One of the biggest struggles has been with his body image and Brad's overall feeling that he isn't a contributing member of the family. As much as I reinforce with him that now is my time to step it up with the tasks around the house and remind him that he'll pay for it when he recovers, it doesn't seem to help. I miss the sparkling smile in his eyes, the playful attitude and the hysterically funny jokes and stories Brad normally shares. He has his moments when this shines through, but overall I can tell he's just plain worn down and depressed of sorts. It makes my heart ache to see him so sad.

A few bright spots that have happened include Avery and I getting baptized together last Sunday. It was such a wonderful event for our family. Pastor Darryl even had us both in the baptismal pool together - pretty exciting for both Avery and me! Here is a picture of Avery and Miss Lynn, the children's pastor when she came to our home to meet with Avery to read scripture and pray with him in preparation for his baptism.


Our baptism made it official and we are now members of North Roanoke Baptist Church. Brad and I are looking forward to finding a Sunday School class to be part of and will also be participating in a financial class offered through the church starting soon.

Another really wonderful thing that has happened is that we had a health scare with Brad's Dad and he had to visit a hematology oncologist because some things didn't look quite right with his blood. Of course we were nervous about this and the physicians are going to continue monitoring him, but initial reports were that things were looking better than we were prepared for.

Round 3 takes place on Tuesday (April 6th) and then we can say we're half way through this never-ending marathon. We pray that Brad's cough gets better and that this cycle isn't as tough as the last one. Thanks for all the wonderful messages of support and love that you continue to send our way.

Much love,
Sandy

So it has been a week since the second treatment and let me go over the past 7 days. This treatment has been a lot different on me than the first treatment in regards to the way I feel but I will go over that later. So if you truly know me then you know that I am this real tough man who can deal with about anything. I love to hunt with my bare hands, pick fights with motorcycle gangs, shoot, I will even get tattoos with a rusty needle but I have never had anything that would drop me on my rear more than this chemo. The first treatment wasn't as bad as I was expecting. I got waited on hand and foot and I got to eat all the mashed potatoes I wanted.

So let me go over the past 7 days and let you know how this tough man is doing. It all started last Tuesday morning at breakfast. Avery, Sandy and I have started this tradition of going out for breakfast on the morning of chemo so we can ease Avery's mind and I can have some normal food before everything kicks in. So after dropping Avery at school we went on to the treatment center and started treatment. Upon minutes of starting chemo I could feel and taste the effects of the second round. After a couple hours of treatment I became very sleepy but I don't like to sleep when people are sitting around me so I tried fighting it but the chemo won and I took about an hour nap. Later I was pleasantly surprised by Avery coming and seeing me and that totally lifted my spirits until the precious child and wife decided to play dress up. If you have not noticed the Goldielocks pic then now would be a good time.

So in a nutshell I feel like an old man in this young, firm, tough body that I have. I wake up in the morning by dropping about 5 pills, I have an ensure shake, I have to have soft foods like mashed potatoes, I have to take Metamucil, oh let see what else. Oh yea, I look forward to sitting in a recliner doing cross word puzzles and taking my mid day nap. I have to sit very close to everything because my focus is not very good. Hold on please while I wipe the drool from my mouth. So if you ask me how I am doing, I might stare at you but it's only because I can't hear you. Even with all these great side effects from chemo the best part is I don't feel any more BOB's on my body so that means that this crap is working. I look forward to the day that this mess is over but until then I will continue to fight on.

Brad

Round 2...

Well, we can officially say that 2 treatments are now over and there are only 4 more to go. Yesterday was thankfully a bit of a shorter day than Brad's first treatment, however, he was the first to arrive and one of the last to leave at the end of the day. There was a special surprise in store for the day though and that was Avery getting to come see his Dad while he was receiving his chemotherapy. Yep, that's Goldilocks and Dr. Wirt pictured above.

Avery had really been asking a lot of questions and was quite emotional the few days before Brad's treatment so I was able to get special permission for him to come visit for a couple of hours. Since patients immune systems are so compromised, the staff typically don't allow children who are not receiving treatment to visit the treatment room because of the germs they are exposed to in school.

Avery thought his visit was the best thing ever because he got to leave school an hour early, get some snacks, cool little cans of soda and a never-ending supply of jolly ranchers (to help remove the yucky, metal taste out of the mouths of the patients). Avery did wear a mask for part of the time, but then was able to remove it later during his visit. One of the best parts of the day was caught in the picture above, when I took one of the hats that are made by volunteers for patients who want them and was joking with Brad that he should consider wearing the blond one since it had braids built into it. Brad's nurse Susan said that we should get a picture with Brad wearing it, so of course I did. The entire treatment room burst into laughter seeing Brad wearing the hat and listening to Avery's sweet little giggle while watching his Dad. Avery told us that the visit really helped him understand things better. Avery's visit really helped put things into perspective for all of us and I am so thankful Avery was able to be part of the experience. Below is a picture of Avery signing his Dad's "chemo shirt" yesterday before we left to go out for our family breakfast, a new family tradition we started during Brad's first treatment. We are so proud of Avery's ability to ask questions and to be so strong - just like his Dad.



Today has been a really rough, emotional day for me. As I mentioned in the last entry, Brad's hair has been falling out, although to most people, the place it was the most visible was on his head, where it started looking like a bit of a patchwork quilt during the past few days. Because Brad was feeling a bit self-conscious about it and because he was losing a tremendous amount of chest and other hair, he decided to shave his head and his chest today. I didn't think this would be so tough, yet it was really emotional for both of us.

We are pulling through and of course trying to be as strong as possible. It's total random outbursts that put me into an emotional coma of sorts, but I guess that's just part of the process. I'm glad to say that the process is 1/3 of the way over for this go-around. Thank you to each of you for continuing to follow our story and send positive words of encouragement - we appreciate each and every one of you!

If you're looking for a way to support the American Cancer Society, but just aren't sure how, Avery and I will be participating in Relay for Life on Friday, April 9th. I have relayed for many years, but this year, Avery and I will relay for Brad. He will have his third treatment session earlier that week and will likely not be able to walk with us like he has for the past several years. Just click HERE if you would like to make a secure, online, tax-deductible donation directly through my fundraising page. Remember, every little bit makes a huge difference and your support is appreciated!

Big hugs,
Sandy

Tears of Joy...

Today has been an exciting day! As you all know by now, each of Brad's brothers were tested to see whether they are a bone marrow match for the future. Well, we received a phone call from Duke University that Brad's brother Chad (his fraternal twin) IS a match! As soon as I heard the news, I burst into random tears of joy - it is the answer to many prayers. Although the thought of the transplant isn't so exciting, the fact that when the time comes, we won't have to go through a matching process is thrilling.

I realize we have been pretty quiet the past couple of weeks. Honestly, there hasn't been much to update you on. After about 10 days or so, Brad's energy started returning and he has for the most part, resumed a normal work/life schedule. We did have another random rash scare (much worse than the first), that brought us immediately to see Dr. Fintel, but thankfully, it wasn't shingles. Brad has been taking an antibiotic to help clear it up, but Dr. Fintel says it's not a chemo rash and I think Brad has him a little stumped on a diagnosis. The antibiotic doesn't seem to be working any miracles though and Brad just plugs along trying to maintain his wonderfully upbeat attitude.

One thing we have noticed is that Brad has had a significant decrease in how quickly his hair is growing and has stopped shaving his head completely. One of the most highly anticipated side effects to the chemo officially started last night. When Brad removed his shirt, it had lots of his chest hair stuck to it. He said when he showered tonight and was washing his chest, his hands were covered in hair. I think this is much more emotional for Brad than he wants anybody to know. I guess I would equate it to a woman with breast cancer having a mastectomy. Don't get me wrong, I'm not equalizing a woman's breasts with a man's chest hair (especially since his hair will grow back), but for each, there are issues of self-esteem and self-confidence involved. At this point, his hair loss is not visible, but it won't be long before it is and his emotions are impacted even more.

The second round of chemo will take place next Tuesday and will be another all day event, but we can then say that two are finished! On the upside of things, Dr. Fintel indicated that Brad's complete blood count (CBC) levels looked great after his first round of chemo and have adjusted his treatments from 8 to 6. Apparently, if the lymphoma isn't in remission after 6 session, an additional two isn't going to do much more.

Speaking of treatment, I do want to share something that has absolutely astonished us and says volumes about health care in our country. Brad's first chemo session cost $16,396. The shot that he had to have the day after chemo to help replenish his white blood cells was another $7,985. Obviously, his life is priceless, BUT at what point do those who have the power to enact change make it happen? We are so fortunate to live in a country where we have access to some of the best physicians and health care services in the world, yet so many cannot take advantage due to the economic hardship it would put them under. We are so fortunate that Brad is getting the care he needs and has a talented team leading the way. How amazing would it be if everybody had the same opportunity?

Hugs to all,
Sandy

The "Brad Wear" Has Arrived...

I wanted to get something small to give to family and friends as a symbol of all the thanks and support we have received for Brad. I'm excited to announce that the official "lymphomaniac Brad bracelet" has arrived - yep, that is Brad's lovely wrist modeling it in the picture above. I was SO excited to see it arrive today! If you decide that you would like to be an official member of the club, just send me an e-mail and let me know (sandywirt@cox.net) and I would be more than happy to drop one in the mail to you. Todd, Kevin, Chad, Mom & Dad - no RSVPs are needed from you - yours are already set aside for you and your families :) One side of the bracelet reads: "Gone Green For Brad" (since lime green is the ribbon color for lymphoma) and the other side of the bracelet reads: "Faith * Love * Cure".

This past week has honestly been better than we anticipated, but still rough to see Brad so tired and not his normal self. He spent most of the week shuffling between our bed, the couch and the recliner chair that we have placed in the living room for his comfort. Thanks Mom and Dad for deciding that after 20 years you all needed to get new chairs so we could get your hand me down - it is a WONDERFUL addition and makes the uncomfortable nights when Brad can't sleep and decides to respond to work e-mail or do Facebook in the middle of the night much, much nicer!! Other than restless nights, lots of nausea, utter exhaustion, and his mouth and throat sores, Brad is so strong and I couldn't be a more proud wife.

The day after chemo, Brad immediately noticed his taste for things changed. The only drink he can drink (and enjoy) is iced tea, although finally after 7 days since treatment, he had a cup of coffee today and said it kinda tasted like coffee again (we're hoping this means his taste buds are coming back until Round 2). Additionally, he has discovered that potatoes are one of the few foods he can eat that really haven't changed in taste no matter how they are prepared. This is great news since tea and potatoes are honestly some of his favorites - we are really thankful to have found a few "comforts" for him during the past week.

Brad has been a real trooper during the week and today he went to work for a few hours which was great so that he could get out and about a bit. Especially since he spent most of last week cooped up in the house, getting out was a good morale booster for him.

We have many thanks to issue in this blog (please accept my dearest apology if I missed somebody on this list):

1. To all of Brad's family for their never-ending support. We are so, so lucky and blessed to have each of you helping us get through this in so many ways - thank you. Whether near or afar, Brad's diagnosis truly is bringing our family closer together and we are very thankful for that!

2. To our next door neighbors Pat and Wayne for the delicious roast they prepared for us last week!

3. A special thanks to Brad's brother Todd for taking two weeks away from his family and work to come home from Hawaii. It was wonderful having you home!

4. To Chad & Cathy Kropff for the delicious delivery of milkshakes for Brad and me (fortunately, I have my taste buds and could enjoy it more than Brad)!

5. To Kim (Brad's cousin) & family for the surprise drop off of iced-tea on our porch last week!

6. To the employees at Brad's branch of East Coast Metals for the surprise donation of gift cards for Brad to put toward whatever need arises.

7. To Chad (Brad's brother) for coming by to hook up wireless internet at our house this past weekend - we just figured out how to make the phone work again :)

8. To Lisa (Brad's cousin) & family for the delicious dinner and beautiful plant that was delivered tonight.

We know we are so very fortunate and that sadly, there are others out there who make this journey without anybody by their side. Please keep them in your thoughts - we saw a couple of patients at the cancer center last week without anybody there to support them. I can honestly say from the bottom of my heart that there will not be one chemo session that Brad will attend alone. Thanks for all the continued support, happy thoughts and prayers you're sending our way.

Love,

Sandy

Round 1...

I know lots of you have been looking for an update about what yesterday was like regarding Brad's first chemo session. In a nutshell, it was a really long day. Although it was anticipated that Brad would be in the chair for about 7 1/2 hours, he was actually in it for almost 8 1/2 hours. I know, you say, what's an hour difference? LITERALLY, Brad was the second person in a chair for the day, got to see her leave as well as all others after her - yep, he closed down the joint.

I felt pretty emotionally strong going into the day, just nervous and although Brad has been telling everybody else that he wasn't nervous, I know the truth :) Unfortunately, my strength weakened as I watched Brad get prepped for his first injection. His nurse, Linda Hardin was AMAZING (that's her in the pic above)! Dr. Fintel, if you're reading along - she deserves a raise. I mean this from the bottom of my heart. Although I cried like a baby watching her get things ready, trying to hold it all in just made things worse. Eventually I just had to leave to let somebody else come and visit. Linda was so sweet - she snuck over to the hallway that I was exiting from and without saying a word just hugged me in the hallway for at least a minute. I sobbed uncontrollably - mind you, this was a woman I had only met 45 minutes prior and she became an instant best friend. She reassured me that Brad was on his way to recovery.

Brad initially received steroids and benadryl for a while and then switched over to the Rituxan antibody for a while. The Rituxan seems to be a pretty cool drug - it attaches itself directly to the bad cells in Brad's body and attacks them directly while not bothering the good cells in his body. Unfortunately, the chemotherapy cannot differentiate between the good and bad cells and just wipes everything out - thus, the extreme side effects. After the Rituxan, came a plethora of other drugs and chemotherapy, including one that is more commonly referred to as the "Red Devil" because of how dangerous it can be if it makes contact with the skin. Brad had to return to the cancer center today to receive a drug that will help his white blood cell count rise.

Last night was a long night. Although extremely exhausted, Brad was unable to sleep for any quality period of time and was very nauseous throughout most of the night. He kept a bucket nearby and thankfully didn't need to use it, but came close on several occasions. We spent most of the night tossing, turning and unfortunately, awake. The steroid Brad is taking gives him lots of energy, which works against the chemo he received. He will be taking the steroid for two more days and then we expect him to crash pretty hard into exhaustion. Brad has already lost his sense of taste in all drinks (except iced tea) and most of the food he ate throughout the day today. I foresee us needing to get an iced tea maker because of Brad's inability to quench his thirst - otherwise I think I may be in the kitchen making tea ALL the time! We're hoping that the tea continues to taste ok to him because he hasn't liked anything else, even coffee, which is normally one of his favorites.

Brad practically had a whole tailgating party at his first session. His Mom and Dad, twin brother Chad, oldest brother Todd and I were all there. He could only have two people in at a time, so we rotated throughout the day. At the end of the day when all other patients but one had left, all of us were able to go to the back to visit. That's all of us in the pic after Brad's long, long day was over.

You may notice that in Brad's pic, his shirt has been cut. Once everything was getting started, Brad realized his shirt was pulling on his port and it was kinda freaking him out. He asked me to cut his shirts to be more comfortable (which I of course, HATED doing, but lovingly obliged). Todd suggested that the shirt become Brad's "chemo shirt" and that each time he goes in for more chemo he wear it to his appointment and have whomever was there for the big day, sign and date it. It was a GREAT idea and we all loved it - you may see some of the signatures on his shirt, including Dr. Fintel and Nurse Hardin.

There are lots of other health scares going on with our family right now and I ask that you pray for Brad's Dad as he has several tests performed during the next two weeks. Our strength as a family is certainly being tested, but we will be ok. I also pray that the sleeping pills Brad will start taking tonight help him get a full, restful night of sleep (if he's one short for tonight I'll say in advance that I have no clue what happened to it!). Finally, we ask for prayers of strength for Avery. Yesterday he was such a strong little man, although very worried about his Dad. We took him out for breakfast before taking him to school to ease his mind and get one more moment of family time in since he went to spend the night with his mom last night. He got to see Brad for the first time today and was so visibly excited that we were home when he got off the school bus. Although Brad is tired, he made some time for Avery and they played a little game with mini football helmets together - great times for both!

A special thanks goes out to Jen for the delicious turkey, spinach lasagna that she prepared for us last night, to Mary and David who sent a beautiful handmade basket filled with Jolly Ranchers to help Brad get the yucky, metal taste out of his mouth and to our wonderful friends Chad and Cathy Kropff who delivered the wonderful gifts - thanks to each of you!

Love to all,

Sandy

Night Before The Storm

Well as you probably heard I will begin treatment in the morning for my issues with Bob. I just wanted to write a quick note of thanks to everyone who has been there mentally and physically with me and my family during these past 2 months. There's no way we could have gotten this far without each and everyone of you. After these 2 LONG months I still can not believe a jerk named Bob has now made me have holes in both arms and hands, in my lower back, and on my neck. I am pretty sure that the following days leading up to months will be very tough but we have faced tough times before and we have come out of it stronger and smarter then ever before.

I specially want to take a few seconds to say thanks to Sandy and Avery. I know that I am not looking forward to what is getting ready to happen to me but I know that there is no way I could get through this without a wonderful wife and beautiful son. I honestly believe I have the best family a man could ever ask for. So no matter what this chemo does to my mind or body I know my heart will never change. I love the both of you so much.

So with this little blog coming to an end I want to say sorry for my wife showing everyone a picture of my chest and it being cut up. Even though I have a chest like Magnum PI I'm not sure a lot of people want to see it. I am just happy I didn't have hemorrhoid surgery. I also want to let everyone in on a secret. So please don't tell Sandy I told you but she is very anal about proper grammar so after each blog I type she goes in and adds all the coma's and all the other crap that goes with the whole proper grammar thang. If she gets upset with me telling everyone about her secret and I know she won't because I ask you not tell her I will just blame it on the CHEMO BRAIN.

What A Crazy Week!

Well, we apologize that it has been so long since we have updated the blog, but there really hasn't been much happening other than waiting, until this week that is. On Monday, Brad had his first appointment with Dr. Fintel since our visit to Duke. The pathologists at Duke confirmed Brad's diagnosis of Follicular Lymphoma, which is good (a second opinion is always a good thing).

Brad's oldest brother Todd came home this past Sunday from Hawaii where he and his family live. Since he's home, Todd went with us to see Dr. Fintel and actually had his blood drawn while we were there to see whether he is a marrow match for Brad. Todd also really liked how down-to-earth Dr. Fintel is so it's good to see that even those who haven't met him before can easily see the connection Dr. Fintel makes with his patients.

While we were with Dr. Fintel, treatment plans were discussed and as mentioned in the last blog, Brad let him know that he wanted to move forward with the R-CHOP regimen. Dr. Fintel believes Brad will need 6-8 cycles of therapy, which will take place every 21 days beginning this coming Monday, February 22nd. Each 21 days when Brad goes to Blue Ridge Cancer Care, he will sit in the chemo chair for 7-7 1/2 hours and it is anticipated that he will feel pretty crummy the first several days of each cycle and then probably pretty exhausted after that.

In order to receive his chemo, Brad had two options - he could get it through an IV or through a chest port. Each option comes with some risks of either droplets of the chemo dripping onto the skin while trying to find a vein, which would burn and remove chunks of skin or through the port, the risk of it becoming infected. Brad chose the port option.

If you are unfamiliar with a chemo port, this is something that is inserted into the body while the patient is actively receiving treatment. Brad's is in his chest, which is one of the most common placements. Instead of the nursing staff having the need to search for veins during each appointment or procedure, injections, etc... are facilitated through the port. The pictures you see is what the actual port that was placed into Brad's chest looks like. The white spot on the top of the port is where injections are placed as a larger "target" for the staff to find. The port is connected through the white tube you see to the main artery leading to Brad's heart and is completely buried under the skin. Although it was kinda strange to ask for an unusable port to bring home, we thought this may be really helpful for Avery in understanding everything happening with Brad - it was so great the staff had one to give us!

Yesterday (Tuesday) Brad's port was installed. It was supposed to be a 3 hour procedure and we were told to arrive at 9am, although the instructions said to arrive 1/2 hour early. We didn't know that the 1/2 hour buffer was already built into the appointment time - oh well, at least we weren't late! The first few steps of getting checked in and looked over went quickly, until Brad was brought up to the room where he would get his IV and get prepped for surgery. We got into the room around 10am, where we were told Brad would be taken down shortly. Unfortunately, due to an emergency with another patient, Brad ended up having to wait for several hours (you can see from his pic that he was really happy about it). It was nearly 1:30 before Brad went into surgery and it broke my heart to see him being taken away. Although I know in my head these are the necessary steps to wellness, it doesn't always make everything feel better. Luckily, Todd and Brad's Mom were along for comic relief and then Dad came over while Brad was in surgery. I needed to stay with Brad for 24 hours due to the anesthesia that he received. We finally made it home around 4:45 last night.

Brad was in pretty rough shape after surgery, is extremely sore right now and really having a tough time. He has to sleep in a recliner because it's too painful for him to lay flat. He did remove his bandages tonight - yep, that's the pic at the top of the blog. Funny story, ok, not so funny story was that the staff performing his port placement thought he had received enough anesthesia when they made the first cut into his chest. That was until Brad said out of the blue, "ummm, I felt that." He said that the lights came on so quickly and he heard somebody say he needed more anesthesia. The next thing he heard them say was that he did really well during the surgery.

Brad was supposed to receive a MUGA scan today which tests his heart to make sure that it can handle the chemotherapy he will begin receiving next Monday (after all this, we sure hope it can!). When we got over to the hospital, we had unfortunately been misinformed about his appointment time and it's actually on Thursday, which means another trip to the hospital tomorrow. Oh well, we are getting used to it and it will only continue to become more a part of our regular routine.

I expect that now that things are really rolling, we will have many things to blog about, most of which I'm sure will focus on how Brad, Avery and I are doing, feeling, etc... Thanks for the continued messages of support and especially to both East Coast Metal Distributors and YMCA at Virginia Tech staff who continue to be such a source of comfort. Brad and I both are so fortunate to have such amazing employers, that even in a difficult economy, are finding ways to ease our mental struggles. Thank you, thank you, thank you.

Much love,
Sandy

My Life is Good

I hope all is well since the last time I did a blog. I am doing pretty good besides the fact we have a foot of snow now on top of the 6 inches we got last Saturday. I would like to find the global warming idiots and choke the living S#%T out of them. So as you can see by the way I started this blog I am about to go crazy. Let me go over my day so far. Remember that with my lymphoma I am supposed to be stress free. So let's jump into this stress free day. I woke up this morning checking the weather to see if I was going to close work, and wouldn't you know the snow had been coming down for hours and the roads looked bad. So, as the boss with a kid's heart I figured I should close and just stay home.

As I sat in the living room drinking my morning coffee and watching the beautiful snow fall Sandy was in the kitchen making a Peanut Butter Cheesecake. I said to myself "man life is good" about that time Avery woke up and said he wanted to go to his mom's house (and it wasn't even 6:30am). Even though I know my life is good I didn't want to get out of my PJ's and go trekking through the woods, I did and all I could think about was "why did I get out of my PJ's"? It's always hard dropping Avery off and not being able to see him for a couple days, but I understand that his mom has to have her weekends with Avery also.

So anyway, I am heading back home from dropping Avery off and I was thinking "man those PJ's sure are sounding good." about that time my cell phone rang. Yep, Sandy wanted to know whether we had anymore rock salt. In my 24 years of living, I am not sure I have ever run out of rock salt during the winter. Well, scratch that off my list of things not accomplished. My meeting with the PJ's had been pushed back about another 45 minutes but I still was saying "my life is good."

Well, well, well, this is where the stress free day begins. After my snowy adventure through Roanoke I finally made it home and into my PJ's. I decided to do a little work on the computer and eat the yummy meal my wife made for me. You guessed it peanut butter and jelly sandwiches with Cheetos (for breakfast). Man, I can already taste that cheesecake right now. Everything was great until the mailman came by with the literature from The Leukemia & Lymphoma Society. After reading through this info I received a lot of additional knowledge about my illness and it makes me feel a lot better going forward hoping to cure this disease.

Speaking of curing the disease, "this is where the stress comes" let me go over ALL of the side effects of the anticipated chemo I will be doing:

A. Redness/pain at the place of injection.
B. Blood in urine.
C. Dizziness, confusion, or agitation.
D. Fever, chills, sore throat, MISSED PERIODS, tiredness, and cough.
E. Joint pains, side or stomach pains, and swelling of feet or lower legs.
F. Shortness of breath.

G. Unusual bleeding or bruising, fast heartbeat, black stools, and painful urination.

OH I AIN'T DONE...

H. Sores in mouth and lips, swollen lips, and excessive thirst.
I. Unusually frequent urination, yellow eyes and skin, pinhead-sized red spots on skin or rash.
J. Darkening of skin and fingernails, loss of hair, nausea or vomiting, and diarrhea.
K. Redness of face, headache, sweating, and itching.

THESE ARE ONLY THE COMMON SIDE EFFECTS

It kinda sounds like one of the Viagra commercials. Anyway I am looking forward to the following weeks in getting this thing going but do I really have to have hair loss? Even with all the side effects "my life really is good" and I couldn't do it without my loving family and friends especially Sandy and Avery who I would do anything in this world for. With all that said, I look forward to blogging soon as long one of the side effects don't kick in, especially the "missed periods."

Our Visit to Duke's Transplant Center...

Yesterday was the day that we have been anticipating for the past several weeks as we traveled to Durham, NC to visit Duke's Adult Bone Marrow Transplant Center. I think in an earlier blog, I mistakenly wrote that it was a two hour drive, but I was wrong - it was three hours each way. It was quite the day, but we were fortunate that Brad's (twin) brother Chad, along with his Mom and Dad were all able to be part of the "experience."

I do use the word experience intentionally because this isn't something you emotionally prepare for. I mean, you think you're prepared for the visit, until you walk through the first set of doors where one is promptly greeted by a hand washing station that is used before physically entering the facility. Across from the hand washing station is a cabinet filled with face masks, that everybody must wear and then depending on whether you're coming to see somebody who is being treated, the extra precaution of rubber gloves and sanitary gowns to be worn over one's clothing. It was immediately sobering to have such strong visual reminders that of those visiting or being treated at the facility, many already have or will have in their future, tremendously diminished immune systems.

Because the weather here has been so icy/snowy, we left for our 10:30 appointment at 5:00am. Brad was supposed to be there at 9:30 to get his registration taken care of. Well, we arrived around 8:15am - yep, in PLENTY of time, even with the yucky weather. Because so many folks cancelled their appointments due to the weather, Brad was able to get in earlier, which was great! In all, it took us about 41/2 hours for the complete consultation.

We spent time with a Financial Counselor who outlined some of Brad's basic insurance coverage benefits regarding the transplant and indicated that should Brad choose Duke as his transplant site, he would have to "relocate" to Durham for at least 6 weeks, live within 5 miles of the hospital and have a 24 hour a day caregiver to live with him once he was moved into the hospital's preferred housing sites for their patients. It was another eye-opening experience. It wasn't that the information being shared was new to us, I think it was just more difficult to hear because it made things seem more real.

After meeting with the Financial Counselor, Brad was whisked away to have his vitals taken, etc... by a wonderful woman who immediately picked up on Brad's sense of humor. She made the comment to me that I must have my hands full with him being such a "firecracker." It doesn't matter where we are or what is happening, Brad's true personality always shines through. It's part of what I love about him so much!

After having the vitals done, Brad and I were brought to a small room where we would spend our remaining time of the appointment. We got to meet Judith, Brad's Clinical Social Worker, who spent time reviewing Brad's family history, his current support system, finding out his likes/dislikes, how he manages his stress, how he is handling his diagnosis, etc... She also asked many of the same questions of me. Yep, I cried. I know, for those who have been reading along you must be asking yourself, "does Sandy really spend this much time crying?" LOL...lately, yes! UGH.

Judith encouraged us to spend time putting together an advanced directive (living will) since that is not something we currently have in place. She also spent time talking to us about the financial stress that comes along with such a difficult diagnosis and a few resources we may be able to obtain through the Leukemia and Lymphoma Society. We talked about Avery and some of the behavioral challenges he has been having. Judith reassured us that his behavior is very consistent with children handling the diagnosis and that his reactions are oftentimes a child's way of dealing with his/her fears. This wasn't a shocker because of some of the information we have found on the American Cancer Society's website, but again, it was another confirmation for us.

After we finished with Judith, our next meeting was with Dr. Rizzieri, the big dog, and the person we were the most anxious to see with the hope that he would have some answers and a plan for us. Something that is cool is that in each of the rooms, there is a tape recorder so that when the Dr. comes in, the patient records all of the information the Dr. says since so much of it is difficult to retain. Each patient then leaves with a cassette tape with exactly what the Dr. said about the his/her diagnosis. I wonder how many patients still have easy access to a cassette player? Lucky for us, we're not the most technologically advanced family and still have two of them!

Dr. Rizzieri started off by saying that in Brad's case there are no immediate emergencies and that we have three goals to obtain in his treatment plan.
Goal 1: To control Brad's lymphoma.
Goal 2: To ensure a long quality of life for Brad
Goal 3: To maybe find a cure.

Goal 3 was the one I was fixated on. Maybe find a cure was confusing, because we were under the impression that a transplant was the only way to cure his lymphoma. Come to find out, a transplant is not always a cure. A transplant comes with so many risks that we hadn't really given thought to (at least in real conversation). There's always a fleeting thought or the disclaimer of potential death that grabs your attention when you spend time researching, but when the Dr. tells you that a little over 30% of patients don't make it through the transplant (when it is an autologous transplant - using the patient's own marrow), it really makes you rethink your life AND your treatment plan. Although the death rates are significantly lower (nearly cut in half) for those with an allogeneic transplant (using the marrow of a donor), the stats were scary and alarming.

Dr. Rizzieri spent time talking about 5 different options for therapy:
Option 1: Chemotherapy (there are about 7-8 types to choose from)
Option 2: Chemo + an antibody called Rituxan to help attack the cancer directly
Option 3: Using the Rituxan antibody alone (often good for patients with a poor quality of life)
Option 4: Radiation
Option 5: Bone Marrow Transplant

Although we were at Duke to obtain information about the transplant and Dr. Rizzieri said we could choose which option we wanted, we were encouraged to try other treatment methods before considering the transplant in order to evaluate how aggressive Brad's specific lymphoma is. Since he is currently listed as Stage 3 (which indicates where in his body the cancer is located - Stage 3 means it is above and below the diaphragm, but NOT in the marrow yet), but Grade 1 (how slow the cancer is developing). Brad currently has the most slow developing lymphoma. The big question is how long will it take Brad to relapse once he goes into remission from whatever treatment method is finally selected. If Brad relapses within 2 years, the Docs can identify that his cancer is more aggressive than what they know right now and either put him through a stronger chemotherapy or move forward with the transplant. Knowing that Brad will indeed require a transplant at some time in the future (this was also confirmed by Dr. Rizzieri), Brad's brothers are moving forward to determine whether or not they may be a family match, raising the opportunity for a successful transplant and reducing Brad's risks.

Brad has decided to move forward with the chemotherapy and antibody mixture. After speaking with Dr. Fintel yesterday afternoon, it currently looks like it will be a regimen known as R-CHOP. This is a common treatment method for follicular lymphoma and is quite aggressive. Brad and Dr. Fintel discussed him taking 6 rounds of chemo and each round is a 21 day cycle, which would take Brad into June/July time frame. Dr. Fintel heads out of town tomorrow and will not be back in the office until February 15th. Brad will see him that afternoon and we're expecting that chemo may start by the end of the month. The risks that Brad has been prepped for include: hair loss (not a big deal for Brad), vomiting, nausea, being tired, body numbness and at risk for infections.

I ask for your prayers not only for Brad and Avery right now, but for prayers of strength for me. Although I feel pretty "ok" most days, I'm really struggling with my feelings of being an inadequate employee, wife and "mom" (even if I am only a step-mom) right now. My emotions get the best of me often and I need all the strength I can find. I know it's in me, but I need to share it with Brad, Avery and the Y better than I have been, while also finding a personal balance for myself so that I can stay healthy through all of this.

I apologize that this is so lengthy today - there's just so much to share and I know several of you have been anxious to hear the update. Thanks for all the wonderful thoughts and messages you have been sending our way.

Love,
Sandy

BOB's M.I.A.

Well not a lot has changed since last time I wrote, which felt like it was last year but here is the latest. If you haven't read any of my older blogs you might want to check them out so you know who BOB is. As you can see, it's early in the morning and I am typing so that means two things either A: the dogs are wired and wanting to play or B: BOB has done something to keep me up. Well you guessed it, BOB has done something to worry me.

As you have read in some of my earlier blogs BOB was a good friend who was there for me in tough times, but he became very mean and tough to deal with. So we decided to send him to another family. Well in 2 months, BOB is at his 3rd home but actually he isn't. Let me explain, Thursday 1/28 I woke up to the beautiful smell of fresh brewed coffee and 2 dogs that sound as if they have built 20 legs. I get up as I do every morning and said "love you Sandy" and let the dogs out and fed them. Then after taking a shower I noticed a big rash on my head. If you haven't noticed, I have an egg shaped head better known as "egg head". Anyway, with this unique style of head, the rash is very noticeable. Sandy got worried and sent Dr. Fintel a message and after a few minutes Dr. Fintel responded and said he needed to see me ASAP. Sandy was so nervous about my rash, she and I stopped at Sam's on the way to the hospital to shop.

So after we got to the hospital and Dr. Fintel looked at it, he said there's nothing wrong with the rash part, but he did say after looking at my head it made him hungry for eggs. I didn't get what he was saying then, but now I understand. So it's now Thursday morning at 8:15 am and I have had a rash today, been shopping at Sam's, and been insulted by any one who comes in contact with my egg head. So as you read this you are probably saying "poor Brad" or man does Brad really have an egg head?

Let's get to BOB, when Sandy and I were talking to Dr. Fintel he said that Duke has kinda ticked him off. I said, I feel you brotha. I felt the same way after they beat UVA the last 2 years in football. Anyway he said that Duke can not find BOB. I said, "you broke up, what did you say"? He said yep, Duke has misplaced BOB. So this was just another great moment in the day for me and it's only 8:30. So after some discussion Dr. Fintel said he would keep us posted about the search for BOB. Sandy the sweetheart she is, tried to calm my nerves all day by being the person who was keeping in touch with latest on the search for BOB. Well the search team that I am guessing contained the local authorities, FBI, ATF, Boy Scouts and who ever else they could get came to an end about 4PM when they finally checked the FED-EX tracking number and showed who signed for BOB on the 12th of Jan.

So Thursday, in a nutshell contained me having a rash, shopping with a rash, being called egg head, people laughing at me at work, and BOB being on the run. They tell me that the best way to handle cancer is to be stress free. I really wish everyone that stressed me out on Thursday would have gotten that message also. So I hope everyone is doing good and I look forward to blogging again soon. I have added a little video of my special Thursday that Sandy and I had.

Oh yea, Thursday night UVA was leading VT by 10 points with 2 minutes left in the basketball game. UVA lost :(

Egg-citely,
Brad

Expect A Miracle...

This week has been one of utter exhaustion, much of it emotional for ALL of us. Last week Tuesday, Brad's brother Kevin came home from Texas and his wife Kelle and Darby flew in late Friday night (yep, that's them in the pic!). It has been years since we've seen Kelle and Darby and it was really great seeing all the kids play together. The only bummer is that Brad's oldest brother Todd, wasn't home with his wife and kids so that the family was complete. Todd will be coming home soon which will be wonderful, but unfortunately, it may still be a little while before we see the rest of his family.

On Saturday night, Mom and Dad ordered pizza and had all the family as well as our dear friends Chad and Cathy over. Unfortunately, Cathy was really sick and couldn't join us, but we were able to enjoy Chad hanging out with all of us. Chad and Cathy are literally like members of the family - Chad and Kevin grew up hanging out together and over the years, Chad and Brad have become friends. It's really pretty amazing to connect to such grounded and sincere individuals like them.

The emotions really started (for me) on Saturday when Kelle was holding something in her hand and called me into the laundry room. With tears in her eyes, she held up a little gray pouch and said that she had something for me. While she was explaining that it wasn't much, it was something that meant a great deal to her and had been given to her by a friend when she and Kevin were struggling with job transitions. Out of the pouch, Kelle removed a silver heart, about the size of a fifty cent piece that on one side says: "Expect A Miracle" and on the other side has a cross. By the time Kelle showed it to me, we were both sobbing uncontrollably and just stood in the laundry room hugging. Kelle instructed me that I was to keep it for as long as I needed and then when the time was right, pass it on to somebody who I felt needed it in their life. Kelle, I know I didn't express this the best in the laundry room, nor did I probably share it with you before you all left, but this was the MOST beautiful gift I could have ever asked for. I have carried it with me everywhere I go and it means more than you know - thank you.

On Sunday, we returned to North Roanoke Baptist for our first "Sunday School Class". Pastor Darryl is conducting a 4-week class for those that may be interested in joining the church in the future. During Sunday School, Pastor Darryl shared his personal story about coming to know Jesus and the struggles and challenges that he often felt along the way. For some reason, it was like he was speaking DIRECTLY to me. Yep, you guessed it, I cried for almost the entire hour in front of the whole group (if I recall correctly there were 9 of us there). After church was over, Brad and I asked him to pray with us. Pastor Darryl's prayer was so powerful and immediately connected to both of our hearts while once again turning on my never-ending eye faucets. I must admit, even Brad said he felt like he was on the verge of crying - that is such a shocker!

This morning, Brad woke up with this really strange rash all over his head and when he got out of the shower, he was full of polka dots - it was kinda scary. Not knowing what was going on, I sent Dr. Fintel an e-mail message to which he immediately responded saying he wanted Brad at his office at 8am. When we got there, Dr. Fintel calmed us immediately by telling us he wasn't concerned about Brad's rash (after he saw it), but had been concerned when he received my message because it's quite common for Lymphoma patients to develop shingles. Brad just has a simple case of "folliculitus" (you all know what that is - just a rash that occurs near a hair line of course). Luckily, after getting a prescription for a bacterial antibiotic that Brad won't get filled, we were on our way out the door and off to work. That too, just set the stage for more emotions for both of us throughout the day.

I'm not quite sure how to explain everything that we're feeling. One minute we're fine and the next minute feeling like we're being stuffed into a box and cannot breathe because of all the unknowns. It's a hard thing to explain to others, but we're hoping the feeling goes away when we start getting more answers and treatment begins.

We head off to Duke on Monday for the day - I'm sure it will be a day with many emotions and fears, but a day that strangely enough, we look forward to. I'm not sure that we'll have anything to write before then, but thank you for keeping us all in your thoughts!

Love to you all,

Sandy

p.s. We ask that you keep sweet little Avery in your hearts and prayers as he is challenged in many ways right now dealing with all of these adult issues. It's hard for him to understand everything and he expressed tonight his fear that his Dad won't ever get better. It's a fear we all have, but of course don't mention. We love you Avery and will continue to do everything we can to help you cope with all of this.

A Small Gold Nugget...

Well, yesterday we went back to see Dr. Fintel to get the results of Brad's bone marrow biopsy. We found out all tests are normal! While we still wait to hear from Duke to see what their docs say, this is a bit of good news.

For those of you reading along, you're probably thinking, "it's not in his bone marrow, this is GREAT news, why does Sandy sound so hesitant?" Although this puts Brad at a clinical stage III diagnosis (because he hasn't had any biopsies of the lymph nodes below the diaphragm, although they are showing up in his PET scan) instead of stage IV, it may not necessarily change things regarding his need for a bone marrow transplant in the future.

Dr. Fintel was a bit more hopeful indicating that the cure rates are up "a little bit" from stage IV to stage III. What this diagnosis does mean, is that it's possible Brad could have an autologous (or self) transplant instead of having to find a marrow match. Because his bone marrow is clean, they can potentially harvest and store it for a future need, although it may be iffy whether or not insurance would cover the expense. Again, Dr. Fintel really stressed to Brad that the world is his oyster in terms of treatment. Apparently there are several options to consider, but none of them will be focused on until we go to Duke on February 1st since they are the ones who will help direct Brad's treatment.

We do know that chemo will be in Brad's future relatively soon, we just don't know exactly when yet. For Brad, that's probably the most discouraging of all of this. He/we just really want treatment to begin to put him on a path to recovery - again, our patience has definitely been tested through each of these phases.

Because school was cancelled yesterday, I called Blue Ridge Cancer Care to get permission for Avery to go with us to the cancer center. They don't typically want kids there because of the health risk they pose to patients with decreased immunity, so Avery wore a lovely pink face mask and got to see the place Dad has been visiting so often lately. I think it was really good for him. Unfortunately, we didn't have the camera with us or I'd LOVE to share a pic of Avery posing as Dr. Wirt.

Last night Brad wanted to surprise me for our anniversary which is coming up on January 26th (8 years married). He sent me an e-mail at work earlier in the week indicating that we had a date at 6pm to celebrate. The most horrible part of all of this was that I had completely forgotten our anniversary was coming up until he sent me the e-mail. I felt horrible, but guess it just fell out of my head with all the other information in there. So yep, last night we officially had "date night". For those that don't know us well, this is a pretty routine thing for us, but not something we had done since before all this started on December 10th. We made a pact to not talk about cancer while we were out and just focus on being together. It was a great, great night. I love you so much Brad and honestly, couldn't imagine my life without you and Avery. You're the best husband a wife could ever want and I'm so glad we're partners not only in marriage, but in this fight for you, TOGETHER.

We will do our best to continue blogging, but sometimes there's not much to write about while we wait for the next appointment. Thank you for continuing to support us and for reading the blog - we're glad it's keeping so many connected to us!

Hugs,
Sandy

p.s. Dr. Fintel if you're reading this, thanks for all your wisdom and humor through this - we feel very fortunate that Brad is one of your patients!

Our Silver Lining...

Another 5 days until we find out the results of Brad's bone marrow biopsy, but throughout the past 4 weeks (geesh, it feels SO much longer since we first found out), we have come to find the "silver lining" in Brad's diagnosis. Since there's not much to update on Brad, we figured now would be a great time to share what we are finding to be the things that help guide our hearts and spirits during the often challenging and emotional days.

One of the things Brad and I have talked about frequently and have attempted several times is to find a church family (this was mentioned in one of our early entries). I am thrilled to report that for the past 3 weeks, we have been attending North Roanoke Baptist Church. Today was Avery's first time getting to go since he is often with his mom on the weekends and he LOVED it! When he left the children's service today he said it was the best church he has ever been to - what a great thing to hear him say. Each week has gotten a little more comfortable for Brad and I and we pray that this will continue to be a good fit for us. In the spirit of all of this is an article that we found on the blog of someone who has had her own battle with cancer. Because it really hit the nail on the head for us as well, we wanted to share it here.

The key points of Don't Waste Your Cancer are the following:
1. You will waste your cancer if you do not believe it is designed for you by God.
2. You will waste your cancer if you believe it is a curse and not a gift.
3. You will waste your cancer if you seek comfort from your odds rather than from God.
4. You will waste your cancer if you refuse to think about death.
5. You will waste your cancer if you think that "beating" cancer means staying alive rather than cherishing Christ.
6. You will waste your cancer if you spend too much time reading about cancer and not enough time reading about God.
7. You will waste your cancer if you let it drive you into solitude instead of deepen your relationships with manifest affection.
8. You will waste your cancer if you grieve as those who have no hope.
9. You will waste your cancer if you treat sin as casually as before.
10. You will waste your cancer as a means of witness to the truth and glory of Christ.

Our silver lining is that although it took a mentally and physically challenging medical diagnosis for us to begin searching again for a church, it did happen and we may have found a perfect match. The first week we went to church Brad said he felt guilty we were going because of his cancer. Although it may have been the reason to encourage us initially, it will not be what keeps us there.

A second silver lining in all of this is that we are reconnecting with friends and family in a way that hasn't happened since Brad and I were first married. Last night, Brad's Aunt Alease, Uncle Jim, cousin Lisa and her husband Randy all came to our house for a visit. The sad thing is that we have never been to their home and this is their first visit to ours, despite the fact that Lisa and Randy only live about 5 minutes away. I feel very fortunate that I'm getting to know other members of Brad's family better through this and that it is reconnecting each of us to what matters most.

Many, many continued thanks for the happy, positive thoughts you send our way - we are so very, very lucky to have you in our lives. We hope that whatever challenges are happening in your personal life, that you too are able to find your own silver lining.

Much love,
Sandy

Bone Marrow Biopsy and Meet Dr. Fintel...

So this afternoon was Brad's bone marrow biopsy - I'll let him soon explain what that was like, but the picture above is Brad with Dr. Fintel AFTER the biopsy - I guess the fact that he's smiling is a good sign.

Brad was prepared for severe back trauma today and luckily, it wasn't as bad for him as he expected! I went with him into the office where the procedure was performed so that I could pull out the handy, dandy question journal and proceed to drill Dr. Fintel with the randomness that pops into our heads at all hours of the day. I mean really, if he is going to spend his time drilling into Brad, why can't I spend my time drilling him? We will find out the results of the biopsy on Friday, January 22nd.

We found out this morning that Brad's consultation appointment (and additional testing/procedures) will take place on Monday, February 1st at Duke University's Adult Bone Marrow and Stem Cell Transplant Center. It is a 4-5 hour appointment, with a two hour drive each way. The best news is that Brad's insurance company has approved Brad to be treated at Duke if necessary. According to Dr. Fintel, the transplant procedure can be controversial as to when it is performed. There are many physicians that like to see it done after all other methods of treatment have been exhausted. In Brad's case, Dr. Fintel estimates that there's about a 90% chance that they will find the lymphoma in his bone marrow and that whether it be in the near future or put off (like some Docs prefer) at some point in Brad's life, he will without question need a bone marrow transplant.

Armed with the knowledge that this cancer is one which easily relapses and cannot be cured without the transplant, Brad wants to immediately pull out the "big guns" and go right for the transplant despite the horrible case studies he has been reading about other patients. In his mind, he can avoid the worry that comes along with wondering every couple of years when (not "if") the lymphoma will return.

I'm going to turn the keyboard over to Brad (yes, the funny one!) to let him give his version of what happened today...

Sorry if my typing or words aren't the best, but either I am standing or sitting on a pillow. Dr. Fintel WAS a great doctor until he decided to run a cork screw which felt like a rusty deck screw into my right hip. Where do I start? Well I received a warm welcome into the lab by drawing blood. After that wonderful welcome they moved me to a small room with a 4 foot bed. I am not sure if you noticed, but I am 6-4.

I layed there while Dr. Fintel lathered my back side up with what looked to me like honey mustard. The whole time while Dr. Fintel was numbing my toosh Sandy just kept asking questions and he just kept answering them while he worked. All I can say is I am very happy he can multi task because if he couldn't it would have gotten really bad, quickly. The next thing I know was that it felt like Dr. Fintel was turning something into my hip. It felt as if he was making homemade ice cream back there.

I felt absolutely no pain until he hit the bone and even then it wasn't bad. After he was done I asked the nurse (who says I have beautiful eyes - I need to get her name) whether he was done. She said he was done with the first sample and he only needed one more. It wasn't pleasurable but it really didn't bother me. I would do it everyday if I knew that would cure this disease that BOB forgot to take with him.

Thanks for staying caught up with us and for all the wonderful thoughts you're sending our way.

Much love,

Brad and Sandy