Conception & Clinical Trial Update

No, we're not pregnant. But we wanted to update everyone on the latest in this department so you know how to pray for us. And we'll give a quick little update on Roger's clinical trial so you can pray for that also.

Now that Roger has started and been on the clinical trial for almost two months, we are not allowed to conceive naturally. One of the clinical trial drugs causes birth defects as it alters genes, DNA, yadda, yadda. And yes, I'm going to share this because I keep getting asked, the only form of birth control that is clinical trial approved are condoms because obviously I have to be off birth control pills in order to get pregnant and they don't want us to take any chances of getting pregnant. Now that we cannot conceive naturally, the next option is artificial insemination. I visited my the ob-gyn/midwife practice we use and although they are interested in starting to do this procedure in their office, I decided I did not want to be their first since they will not be doing any testing of reproductive capabilities and just doing the insemination. Since I have never been pregnant I do not know if I can get pregnant and I'd like to have that checked before we start using up the nine chances we have saved at the cryobank. Now we have to get referred to a fertility center and we found out last week none of the fertility centers in Austin accept our insurance. After an interesting phone conversation with our insurance, their solution is for our primary care manager (PCM) to refer us to a fertility center here in Austin anyway. The insurance will deny it then they have to find us a fertility center that accepts our insurance. I don't know how long that will take or if it's going to be that easy, but you know we will keep you informed here on the blog. We are asking for prayer for the wait and for God's direction through all of this process. We definitely don't want to do what we want but to do His will so we do what's best for His kingdom and His glory. If we are not meant to have children of our own and we are supposed to foster or adopt, that's what we want to do. And we'll definitely need clear direction for how far to go in this process and when we should stop. So please pray for us to go to God in every part of the process and listen to Him and to be have peace and joy with what He wants us to do.

As for Roger, he is almost done with the second cycle of the clinical trial (each cycle is 28 days). His first MRI, echo-cardiogram and blood tests at MD Anderson will be next Monday, October 4th. He will follow-up with his oncologist and the rest of the clinical trial gang on Tuesday. This meeting will most likely not be the decision making meeting to continue the trial. That will most likely be done at the end of the fourth cycle with the second MRI in December. Of course we'll keep everyone updated here on the blog.

So now you know what's going on with us and how to pray for us. We really appreciate the prayers. Thanks!

-Holly

Sewing Projects-One Hour Dress

So I have been on a sewing kick lately. I was introduced to a blog recently that had a list of free online patterns and I found a few I wanted to try out. I decided to start with this One Hour Dress pattern. It was really neat to try and I learned a lot by experimenting. This was my first time to sew with knit fabric. And as a result I definitely know why I always avoided knits. It definitely took me more than one hour to make it. Even a few of the commenters said it took them about two hours. I even made the cheetah print belt to go with it. I have been wanting a cheetah print belt for a while to jazz up simple dresses but couldn't find one at all. So I decided to make it. Of course, as always, I used coupons from Jo-Ann's to purchase the fabric for the dress and belt. I love coupons.

I also created a simple craft this week called a t-shirt necklace. A friend told me about it and I was intrigued enough to Google it and try it. It was a lot of fun, super easy to make and looked really cool with the outfit I wore. I am hoping to start another dress this week to go along with a dress I made last week and I'll blog about it when I'm done. I have a few other sewing projects lined up which should keep me busy for a while.

Serve Austin Sunday

Well our last Austin New Church Serve Austin Sunday project held on August 29th was a huge success! You can see pictures from the Communities in Schools Extreme Classroom Makeover by clicking on the image to the left. It was so cool to make over a room that would help kids feel more comfortable talking with the CIS counselors and enable CIS to better serve these kids and their families. Great job everyone!

Our next Serve Austin Sunday will be huge! We are hosting a HELP garage sale party on the morning of October 31st at the school where our church meets. All proceeds will go to HELP which is dedicated to ending extreme poverty by rescuing orphans, restoring their hope and renewing their communities.

So would you please look through your homes, garages and sheds for items you would like to donate to our garage sale party! We will be collecting donated items so you can bring them to us or if we can, we will get them from you. If you would like to volunteer at the garage sale or donate baked goods or breakfast tacos, please let us know.Thanks!!

One Month Clinical Trial Check-up

From Holly: As we drove into Houston, I saw all the buildings flying past us and I just got this overwhelming feeling because of what we were doing there and why we were going there. And I just stopped reading to talk with God to myself asking him to help me not worry about today or tomorrow and just live every day, day by day and asking him to help me be the best wife I can be, patient & understanding & there for roger as much as I can. I had a few tears which made my nose run and I used all the napkins we had in the glove box. Le sigh.

From Roger: Wow, Holly is making me follow up her post with mine. No tears, sorry. Yes, so we had our one month follow-up. This was basically to see if my blood cell counts are okay and if so, to increase the chemo dosage. They didn't increase it a whole lot, but this may mean more stoppage while on the chemo and more fatigue. I snapped a picture of my daily regimen for you to admire. The first set of pills on the left are called Lapatinib. Each one of those orange monstrosities are 250mg of signal inhibiting goodness. This is the experimental drug that they have been using again breast cancer and certain types of melanomas. It has been promising for my tumor. I can't eat anything for two hours before I take these and for one hour afterward, so I just get up in the morning and take these first thing and don't eat anything for an hour. My experience so far with these has been okay. These leave me a little loose and I end up having diarrhea a few times a week. Other than that, they're not bad so far. The next row over are my daily 10am pills. Starting from the top is Depakote ER, then two Keppras, both anti-seizure drugs. Below that an allergy pill, kinda like Sudafed-D, but free (thank you taxpayers!) And lastly a multi-vitamin. I've been looking into taking better multivitamins and supplements from USANA, but more on that in another post. The next row to the right are my nightly 10pm pills - same anti-seizure pills that I take in the morning. And last but not least, the chemotherapy pills, Temodar. Everything else but these I take every day. One cycle of therapy is 28 days. I take the Temodar on days 1-7 and 15-21. I have to take them at night but only two hours after eating and then nothing afterward for one hour. In addition, I also take an anti-nausea pill called Zofran (the litttle pill to the left of the Temodar capsules) thirty minutes before I take the Temodar. I have not really had any issues with the Temodar yet except for constipation, but I have been able to combat that with a stool softener, like Colace. They warned me today that with the increased dosage I might be more constipated and might feel more nausea, but we'll see. I'm glad I got the constipation thing pretty much figured out with the Colace, because that was a rough first week.. I mean, have you ever pooped rocks before? It hurts... trust me.

Sitting in the waiting room at the pharmacy was boring as usual today... annoying people with their cell phone ringers going off all loud, phone conversations going on, being called to the desk only to be told to keep waiting because the insurance wasn't finalized yet. One thing caught my attention that I kept hearing though was the pharmacy clerk tell patients what their co-pays were for their meds... $40, $60, $100.. then I look at mine. $9 for 28 days of pills per prescription. Did you hear me? NINE! And that's at a pharmacy!! If I go through the mail order pharmacy it is only $3. The whole picture does not come into focus until you look at the bill for the drugs I picked up today. The Lapatinib is a trial drug, so it is provided to me for free. But the Temodar is not. The total cost for two bottles was $12,300.60. Wait!! What?? Yeah. So, as you may or may not know, the US Army Medically Retired me, so I have Tricare for insurance and the government foots most of the bill. Now, they never pay full price. It looks like they are only paying $8397.60. I am paying $18.00 Why am I sharing this? Because I want to thank you. I want to thank you for not only paying your taxes, but for supporting those that are still serving and those of us that served. It is because of you that I have this chance at life. I was pleased to hear that last week Operation Iraqi Freedom was finally ended. Most of our soldiers there are now in a support role. I met a lot of guys that were injured in Iraq when I was at Walter Reed in Washington, DC and I'm glad that very few, if any, will have to suffer through hell there again. I'm not saying that I didn't support the purpose of going there, but there were some things that the leaders above didn't do right. They failed the men and women on the ground in many ways and I'm glad that they are taking care of the ones that need it. I have no idea where I am going with this, so I'll just end it here. Thanks again to everyone for your prayers and thoughts. We love you and will continue to update you.

-Roger

Approved! and Greetings RFL-ings

I had to send an email to my entire office today. Not to tell them that I had cancer, but to tell them that there is a stupid freaking tumor about the size of a quarter expanding in my brain pushing brain matter out of its greedy way and increasing the risk of seizure. I felt like it was time to let people know what is going on and to let them know how to help me if I do have an episode. That also let me include a shameless plug to the blog… so for all of you RFLers… Welcome! You have no idea how much I love you guys, love my job, love what you do, and love serving you every day. You change people’s lives and it makes a bad day at work okay knowing that you guys make many bad days much better for a lot of people out there. Thank you.

Okay, so enough of that. I found out yesterday that I am approved physically, medically and insurance-ically for the trial. I got a call from a case manager at the insurance company who also told me that I should be eligible for travel reimbursement now. That means they will pay for gas, all meals, parking and hotel for our trips to Houston. I called the travel people and they said the same thing and emailed me all the paperwork. I also got a call from MD Anderson and they finally said that they can give me the meds. I had some flexibility on the date to get them so I actually asked my boss which day would be best and we both agreed Tuesday would be a better day. I have missed key meetings on Mondays for five weeks in a row and have not worked a full five day work week in eight out of nine weeks due to travel, and this week will be another. I only get so much time off and have been working extra hours to make up time so that I don’t have to use so many days. Right now I am planning on driving to Houston and back on Tuesday. We’ll have Holly’s niece Elizabeth and nephew Cole with us this week, so I’m going to have to drive by myself since [two 6-7 year olds] + [6-7 hours on the road] = murder. I’ve been trying to find someone to go with me, but no luck so far. Any takers?

Wednesday will be my first day on the trial. The nurse said I will definitely need some anti-nausea medication and they are going to give it to me. I am not looking forward to it, but am ready to get started. There’s a lot I want to share about the past few weeks but I’ll have to save that for another post since it’s so late. By the way, if you use some type of news or feed reader, you can follow the blog by clicking the links at the right of the webpage or you can scroll to the bottom of the page and sign up for it to be emailed to you whenever we post an update. It’s free and your email address won’t be sold or anything. Stay tuned as we embark on this journey… it should be… um… interesting. And barfy.

-Roger

Eligible for the Clinical Trial

Holly and I spent two days at MD Anderson and after a battery of tests yesterday we now know that I am healthy enough and eligible for the clinical trial. Only issue is, the insurance would not approve it until after I was approved. So now the good people at MDACC are waiting for Tricare/Humana to approve and then once they do we'll have to drive BACK to Houston to sign more paperwork, get the instructions and the meds. We'll have more information about the tests and all (they were pretty cool!) but I just wanted to get this out for now. I'll let you know when we get the final approval. I think the earliest we'll be able to get back to Houston at this point is Monday. Love you all! Thanks for the prayers and keep on praying!!

-Roger

Aaaaand.. we're BACK!

This is a test.. are you there? We've had a few issues with the blog and we think we have gotten them all fixed now. Did you miss us? Oh.. there is so much to share.

Clinical Trial Risks & Side Effects

Okay, part of this is so T.M.I., but we need prayer people. So you have been warned.

Roger received a sixteen page document last Friday from MD Anderson regarding the clinical trial. It consisted of the informed consent and authorization to be a participant in research, a description of the research, a description of the study, potential benefits, alternative procedures or treatment and all the signature pages. Seven of the sixteen pages just covered the risks, side effects and discomforts to the participant of the clinical trial. Roger told me about one particular risk when he got home Friday which threw me for a loop for a bit. Then I sat down and actually read through the whole document. As I was reading through the pages and pages of risks and side effects and stating them out loud as I came across really “interesting” ones, I actually said to Roger, “Have you read this? And how do you feel about all of these?” There were definitely some scary ones.

But one threw us off the most. It was the risk Roger told me about when he got home from work. I kind of went off the deep end for a little bit. You see Roger and I have been praying since last year, okay, me more than Roger, about me getting on board with having a baby. Roger has been more ready than me since he had his first craniotomy in 2006. After he went through paralysis, living in a rehabilitation hospital to learn to walk and function normally again then 30 days of radiation, he told me he thought he wanted to have a kid and did not want to miss out on that experience. We had always felt like God had used us for many things and when it came to having children if God wanted to use us that way he would make it happen and we were fine with that. We both had not felt the passion yet to have children so we both agreed if we had kids we did and if we didn’t have kids we didn’t. No biggie until he shared this with me. So I told him at the time, “When you are really ready, let me know.” A few years pass and we are both finally back in Texas and decide to build a house. One month after moving in, Roger looks over at me and says he thinks he’s really ready now. And the praying began for me to get on board with that. Obviously more praying by me of course. I read a couple pregnancy/childbirth books last summer. And this past February we met with a midwife. That’s when I felt a tiny bit excited about the process. And since then have been praying for God’s direction on timing, etc. We thought we had a plan of me getting off birth control in June, watching for signs of ovulation for a month to make sure my body was all ready to go and begin the trying in August. Then at the end of February we found out about the questionable MRI results. We began to pray about and deal with that and also asked God to direct our plans for pregnancy. We didn’t know what we should do: go with our plan, start right away or put it all on hold. There were so many factors of Roger’s yet unknown treatment affecting what we should do. Was it tumor growing back and would he have surgery and be paralyzed permanently or worse coma or death? Would he have to have radiation or chemotherapy after surgery or in place of surgery that could affect his fertility? Or was it radiation necrosis and what the heck do you do with that? These are the wonderful things you get to think about and discuss with your spouse when you have cancer. Twice.

We knew we couldn’t make any decisions until after we went to MD Anderson. After we met with the neurosurgeon at MD Anderson in May, we thought our only option was surgery and we still couldn’t make a decision until we met with the neuro-oncologist. The Thursday before we were scheduled to meet him, we were hosting our weekly neighborhood dinner at our house. Roger and I were standing in the kitchen prepping for grilling pizzas with 10-12 of our favorite people, talking about anything and everything. And Roger says to me, “Why are we waiting? Why don’t we just start trying now?” So I said okay. I was already at the end of my birth control packet and would just not start the next one. The following Tuesday we meet with his neuro-oncologist who gives us three more possible options before surgery. So we think great, we have time. Thank goodness we started now. I specifically asked him will the drugs in the clinical trials affect Roger’s fertility and he says basically it could and we should look into banking some sperm. We had already discussed this option but were thinking we had plenty of time and could even keep trying while he was doing the clinical trial. Roger took the blood tests required for it the week before we went to see the neuro-oncologist just so that part of it was done.

Then Friday we get this sixteen page document and it clearly states at the end of the risks, side effects and discomforts paragraphs in its own little section that not only should he not father a child while on the study but he should not father a child for six months after the last dose of the study drugs and must use birth control. If his tumor responds to the study drugs he could be on the study for up to two years. What? I just got on board with having a baby and this happens?! The acceptable forms of birth control are birth control pills and/or condoms. Great, I just got off birth control pills. And if your partner becomes pregnant you must tell the doctors right away. Nice. There goes our chance of trying while he’s on the study and gives us about a month and a half at the most to try to get pregnant naturally. If we don’t conceive before he starts the study, he’s got to bank some sperm and then we can start the process of conceiving via artificial insemination or invitro fertilization. Two things I never thought I would have to do. Neither fun nor cheap. At this point I’m thinking I have to get pregnant before he starts the study because I don’t want to take the chance of getting pregnant while he’s on it for fear of what it would do to the baby. So for Roger’s sake, we better get pregnant before because I don’t think I want to have sex while he’s on the study if I’m not already pregnant. Poor Roger. So we are asking for prayer for us to conceive before he starts the study, for protection from all the risks, side effects and discomforts, for peace and strength to continue to make it through this, and that we seek God and glorify Him in everything.

Thank you, Holly.

Possible Clinical Trial

If you have not read our last blog, take a look at it now before you read any further or you might be a bit lost. You can find it here. Holly and I went over our options again yesterday and think we know what we’d like to do as long as Dr. Lang is in agreement. So after that, we set out to Minute Maid Park to watch the Houston Astros take on the Washington Nationals. The beginning of the game was a little boring, but the end was fantastic. Bottom of the 9th, 2 outs, 2 men on base and Astros are down with a score of 6-7. We thought all hope was lost, but then Lance Berkman singles to left and two runs come in to win the game. It was pretty cool… literally too! They closed the roof and turned on the A/C, so it was actually pleasant to be there. We thought we were going to sweat like crazy in the humid evening air, but it turned out to be a great evening after all.

Today we were scheduled to see Dr. Lang, my Neurologist, at 2:45pm; but we got a call yesterday asking if we’d be interesting in moving the appt earlier so that we could leave town earlier and we gladly said yes. We got there at 11:30am and finally saw him at 12:30pm. It would have been sooner, but their paging system was down and they had a tough time letting him know we were ready. It’s okay though… I had fun lounging on his recliner in his exam room and playing with the tools they use to show things to patients… my favorite was the brain I could take apart and put together and wouldn’t you know it, he walked in just as I got it apart. I put it together again though pretty fast. Seemed kinda easy; just saying.

Anyway, he said that he had spoken to Dr. Conrad, my oncologist, regarding the trials and explained each one to us. He agreed that the Lapatinib and Temozolomide trial is worth trying. The Delta-24 trial is really only for people that have a grade 3 ependymoma. They don’t know if my tumor is now a grade 3 and the only way to find out is to do a biopsy by cracking me open. But if they are already in there they might as well remove it, so it is a catch-22. There are some other factors for that trial that make it a not so great fit for me, so for now, that one is off the table. The last trial, 744, he didn’t know about, so that too is off the table for now. He feels that in the end, the tumor will have to be surgically resected (removed), but since it is so slow growing, the first trial is worth a shot.

So that was it. Decision made. They notified Dr. Conrad that we are interested in the Lapatinib and Temozolomide trial and we should be hearing back from them soon. Apparently we will have to go back to MDACC again to again meet with Dr. Conrad to talk about the trial and all the specifics behind it. I am hoping it is as soon as next week. If we start the trial in the next weeks, at the end of the two rounds of the trial, if no progress is seen and the tumor needs to be resected, it will most likely happen no earlier than August 2010. This will allow us to make all our trips we scheduled this summer! I might feel like crap, but we’ll get to be with friends and family, which will be a huge blessing.

A few last notes… To be sure that this tumor was an ependymoma, MDACC wanted some slices of the tumor sent to them from Washington, DC. I put in the requests to the DoD in DC and MDACC got them, examined the slides and agreed that the tumor was an ependymoma, grade 2. Also, the MRI from yesterday revealed that the tumor has grown a bit more, just 1-2mm in three months, which is slow.

I'll let you know when we have anymore news. Thanks for the prayers and support.

-Roger

Non-Surgical Options??

We had an interesting visit today at MD Anderson! We started early with an MRI, blood tests and then moved on to see my Neuro-Oncologist, Dr. Conrad. He already looked at my MRIs from this morning and told us that in his opinion, the growth was recurring tumor growth, not radiation necrosis. We went over the new images and it appears that the tumor has grown an additional 1-2mm since February 2010, which is very slow. With that in mind, he told us that we have the luxury of time, and with that, several options. First of all, surgery is always an option. But there are a few clinical trials I may be a candidate for.

We discussed the surgery again and Holly brought up the blood vessel that goes right through the tumor. Dr. Conrad said that Dr. Lang (my neurosurgeon) is very patient and again gave me a warm fuzzy that he is, in fact, a badass. Dr. Conrad said Dr. Lang is very patient and would do everything possible to avoid cutting the vessel out. But since the tumor is taking it sweet time and I’m healthy he suggested several clinical trials which are very interesting.

First, there is a trial being conducted by the Collaborative Ependymoma Research Network (CERN) Foundation specifically for my type of tumor, which is an ependymoma. Basically I’d be on a chemo drug and a new drug that is a signal inhibitor. It targets this type of tumor and I am a perfect candidate. I’ll have more details on this later, but you can read about it here. This would put any surgery off for several months until they see if this works. I could be on this treatment while in Austin, have blood tests there and only have to return to MDACC every two months for MRIs and would continue with the treatment as long as they see progress. Progress would be the tumor shrinking.

Another trial that I am eligible for is a very interesting one. There are two groups in this trial which has been researched by both of my doctors along with other doctors. In group A, they make a small incision to get to the tumor and inject a virus named Delta-24. It is a modified live virus. Sounds Sci-Fi, eh? They inject the virus directly into the tumor and it kills the tumor cells but leaves brain cells alone. In group B, they insert a catheter into the tumor and leave it there. They then inject the virus and in two weeks they suck the tumor out. Group B should be approved by the FDA for testing in the next few weeks. You can read about Delta-24 here and see both of my docs.

Lastly, there is another drug called 744 that will be out in trials in the near future. He didn’t talk a lot about it, but said it may also be a non-surgery option in another few months. There's a little about it here.

All of this is very interesting and does not mean this is my last hope, but rather because the tumor is so slow growing, is an opportunity to try an alternate treatment before another invasive surgery. Tomorrow morning we meet with Dr. Lang and discuss all these options again with him and maybe make a decision. I am excited to have the opportunity to participate in a trial and possibly make history with a new drug and maybe help save more lives in the future. We’ll have more info tomorrow after the appointment.

Again, thank you all for your prayers. Wow, what a road we have been traveling down. As for Holly and I, we are off to have some fun and are going to catch an Astros game tonight against the Washington Nationals, Can you believe I rooted for the Nats when I was in DC? I guess I felt sorry for them because they were new.

-Roger

Another Visit to MD Anderson

I'm late posting this, but Holly and I are off to Houston to another round of appointments Tuesday and Wednesday. We slept in late today since it's a holiday and ran some errands. Also hung a new light fixture over our dining table; Holly loves it! After we pack up some stuff we'll head out.

First thing Tue morning I have some labs, an MRI and a visit with a Neuro-Oncologist. I'm not sure what to expect during his visit so we'll keep you posted. Then Wed afternoon we meet with my Neurosurgeon again to make a final decision about the surgery. We'll let you know as soon as we can.

We hope you have enjoyed this Memorial Day weekend. We mourn those that gave the ultimate sacrifice protecting the freedoms we have that many in this country take for granted. For me and Holly, these holidays always have special meaning as they were our brothers and sisters in arms. But we also salute those that have served or are still serving. Thank you for your dedication.

Serve Austin Sunday (May 30th)

Austin New Church and Restore Austin’s next Serve Austin Sunday is right around the corner – May 30th. For those who are not familiar with Serve Austin Sunday, it is a Sunday in which several churches cancel their normally scheduled worship services in order to collectively serve this great city – Austin! Some of the projects we will be doing are as follows:

• DownTown Grill Out: At the corner of 7th and Neches we will be feeding over 300 of the Austin homeless population with grilled hamburgers, chips, and sodas from 4-6pm. If you have extra summer clothes, bring them with you so we can help our homeless brothers and sisters stay cool this summer. (4-6pm)
• Restore the ArtHouse: Join us as we continue our renovation project on the ArtHouse building so we can better serve the poor and marginalized of East Austin. (1-3pm) .
• Extreme MakeOver: We will be teaming up with Communities in Schools to create a conducive learning environment for Blackshear Elementary. We are still in need of the following: click HERE.
• Restore Jackies: Join us as we partner with Jackie’s Fine Arts School as we continue to beautify the campus and facility for the children that Jackie serve (10am-12:30pm).
• BlackLand Community Development: We will be partnering with BlackLand Community development once again to help renovate and restore low cost housing for the poor who are seeking to make a change in their life.
• Youth Restore: ANC’s Youth is partnering with Mobile Loaves & Fishes to prepare food for and then feed the homeless.

Cancer Update: Next Steps

First of all, thanks again to everyone. Thank you for the cards, calls, texts, Facebook comments… it is amazing to me how quickly and efficiently we can get the word out about what is going on in the moment compared to four years ago. The first time we went through this we had the blog and that was it. The closest thing we had to an instant update was the ability for Holly to create an audio post that could be listened to on the blog immediately after it was posted. We don’t have the ability to do that anymore but now we have the ability to post quick text/picture updates from our phones to Twitter, Facebook or the blog. And the blog instantly posts a link to Twitter and then to Facebook… Amazing.

Even if you don’t have a Facebook account, you can still see our short Twitter updates for free on Twitter; just see the links on the right of the blog website. And just like we setup four years ago, you can still be emailed when a new blog is posted (scroll down to the bottom of the blog website to sign up.) Only problem with that is it is not very fast, the free version we have for that has its own schedule. But it is there if you need it. Any way you choose to keep updated, thank you for reading and checking in.

So, what is next? Well, quite a bit. This a long post but it’ll go quick, I promise. Let me start by telling you about our visit to MD Anderson Cancer Center (MDACC) on Wed, 4/26/10. We drove up Tues night and stayed with Holly’s battle buddy from Army Advanced Individual Training, Tina, and her husband Kyle and two kiddos Kyle Jr and Evan. They had not seen each other in 14 years! It was nice for them to visit and get a chance to catch up. They truly made our evening relaxing and Tina even made us breakfast at 5:30 in the morning. Thank you Tina! We headed south to the hospital at 6am and got there around 6:45am. When we got there we were a bit overwhelmed by the size of the place. This place is huge. Just southwest of downtown Houston, it is nestled in the middle of the Texas Medical Center that consists of 49 institutions including 13 Hospitals. We found our garage, figured out how we were supposed to pay and made it to the Brain and Spine Center on the 7th floor before they seemed to be open. They called us back a little after 7am, did some paperwork and paid our co-pay then sat and waited for vitals to be taken. After vitals were recorded we sat for a bit again and then were taken by our nurse, Stacy Flach (BSN, RN, OCN, Ambulatory Care Nurse), to an exam room. After another short wait the door opened and in marched our Nurse Practitioner, Cheryl Martin (RN, MS, FNP-C, Advanced Practical Nurse), Resident doctor (poor student) and our Neurosurgeon, Dr. Frederick F. Lang (M.D., F.A.C.S., Professor and Director of Clinical Research at MDACC). These people are going to save my life.

A few weeks ago I sent copies of my MRI CDs from three different military hospitals to them to look at. Dr. Lang brought up the images from those CDs on his computer… they were able to import those images and they were now part of my electronic medical record. I thought that was pretty high tech, even for me, an IT guy! So these are the key points that we discussed:

• Looking at the MRIs there is a change from the MRI taken in July 2009 to the one I had in Feb 2010; the mass is approximately .7mm larger from front to back
• The mass could be radiation necrosis (dead brain tissue from radiation therapy in 2006) or the tumor growing back
• There is a blood vessel passing right through or over the area of concern that might still have had some tumor cells left on it after the first surgery and it could have grown back from that
• Four years ago, the tumor was diagnosed as a grade 2 ependymoma, and those can come back more aggressive
• The surgeon’s first opinion is to take whatever it is out, but the risks this time are greater than the first; going back in a second time has a higher risk of infection, coma, permanent right side paralysis and possible damage to my speech center in the brain
• It is also best to remove the blood vessel because tumor cells may still remain on it and the tumor could just grow back again, but removal of the blood vessel means that whatever it feeds in the brain will die (They don’t know what it feeds yet)
• Another option would be to use the Gamma Knife (targeted high dose radiation therapy) but they need to know if the tumor is a grade 2 or 3 or radiation necrosis and that cannot be determined unless they remove the tumor (Yes this is a catch 22)

So now what happens?

• MDACC wants to study the tissue that was removed from my brain in 2006 because they want to make their own diagnosis of the tumor pathology; I have already contacted the two institutions in the DC area (NNMC-The Naval National Medical Center in Bethesda, MD where my first surgery was performed, and AFIP-The Armed Forced Institute of Pathology, the institute that provided the pathology report in 2006) that have my tissue samples and requested slides be sent to MDACC as soon as possible
• They will seek insurance approval for new MRIs at MDACC and to see a Neuro-Oncologist
• Have new Labs and MRIs taken at MDACC
• See a Neuro-Oncologist at MDACC (specialists of cancer in the brain) and have them review my case to see what their opinion is of what should be done next

We will most likely have the labs and new MRI and Neuro-Oncology visit done on the same day in Houston in the coming 2-3 weeks. The Neuro-Oncologist will give us his opinion and then our two doctors will discuss my case. If they both decide that surgery is the most prudent option, we will go with that. The first possible date for surgery is June.

So that was what we discussed with the doctor and he stepped out along with the resident and the Nurse Practitioner was ready to talk to us, but I needed a moment. She offered to step out and I had to let it go. What the doctor said scared me. I knew that the risk would be inherently higher this time, but dang. And paralysis would really suck, but all of it is just damn scary. I just needed to cry and pray that fear out, both of us did. She finally came back in and started discussing the next steps and dates and I mentioned that all of this was really going to destroy our summer plans. We already have four short trips planned in June and July. I know those are really not important, but we started thinking of everything. She asked us what our plans were and we told her the first was in June and she mentioned that we probably would not make that one. Then she asked us what else we had going on and we told her about the two weddings in July and a five year family reunion. Then she said that we’d probably be able to make those. I didn’t get it and I mentioned that I didn’t know how because I’d probably be in Physical Rehabilitation for a while… she leaned in toward me and she said that we ‘would not have to worry about that.’ I didn’t get it. It threw me off. Then she said, ‘Dr. Lang is good,’ that ‘people wake up from their surgeries moving their arms and legs saying that they love Dr. Lang.’ I still don’t think I got it after everything she told us. I was a bit stunned. We talked about what we needed to do next and that was it. We were done. We got there at 7am and were done by 10am.

What she said made me feel better, but know we have to be ready for the risks and possible outcomes. Holly and I have a lot to discuss, prepare for and pray about. But I will tell you one thing… I have no doubts about this hospital or our medical staff. They gave us a bunch of business cards and a neat little protector to organize everything in. Our team consists of the following:

• Patient Advocate
• Social Work Counselor
• Patient Access Coordinator (deals with Insurance)
• Nurse
• Nurse Practitioner
• Neurosurgeon
• Neuro-Oncologist
• And many other professionals we have not even met yet

I feel pretty good about this whole thing and I’m ready for whatever God throws our way. But I am also trying to live in the moment and enjoy my time with Holly right now because I know it will be difficult after the surgery. So, please do us a favor? Pray for us. Pray for peace for our minds, wisdom for the medical staff, courage to get through this again, provision for all the logistical needs that we don’t even know we need yet, and for God to be glorified through this.

Okay, that’s it for now. This is like the longest blog post ever, but this answers all the questions we have been getting. I’ll try to post MRI images soon so stay tuned. Thank you for reading and staying by our side. We love you.

-Roger

Pray & Praise

We want to thank everyone for the prayers, thoughts and wishes we received on Tuesday and Wednesday. Roger will blog soon with all the details from yesterday and what the next steps are. Many people asked us how they can help or what they can do. There are only two things you can do for us: pray and praise. Pray for God to give Roger strength and courage to go through this again, pray for guidance from the Holy Spirit to make the right decisions for treatment and pray for protection from Satan's attacks and lies. And praise God for all he is, all he has done and all he is going to do. We can't thank God enough for blessing us with the ability to go to MD Anderson Cancer Center for great treatment, our experience there yesterday was unbelievable, and we can't thank God enough for surrounding us with amazing family and friends to keep us encouraged, hold us up and make us laugh. We love you all, thanks again. ~ Holly

Cancer Round 2

The fine doctors at MD Anderson Cancer Center have confirmed our suspicions… the tumor appears to be growing back. But we have a plan and are ready to fight it again. I'll have more details later today on the blog. We are driving back from Houston now and can't wait to get home. Thanks for the prayers.

-roger

Headed to Houston

It is Tue afternoon and Holly and I are heading to Houston. We will be
staying with Holly's friend Tina. They were battle buddies in Army
Basic Training and have not seen each other since 1994! So it will be
a nice visit. We head out early Wed morning for our 7am appt. We will
both try to update on facebook and Twitter tomorrow. If you go to the
blog site there are links to our facebook and Twitter pages on the
right side of the page. Check back in tomorrow to see the heck we are
up to! I am excited to begin the process to see what may or may not be
going on. But there is always the chance they will tell us to come
back in a few months for more tests. We'll see. Thanks for the prayers.

-rog

Ready for MD Anderson

I got a call early this morning from Wandra at MD Anderson Cancer Center (MDACC) telling me that they did get my stuff and the doctor was going to review it as soon as he could.

I got a call a few hours later from Wandra telling me that the doctor could not get the CDs to work on his computer. Now me, being the IT expert that I am, knew that those CDs were going to workk fine, they were exact copies. I asked her if she had them and she said yes. I asked her if she could see if they work on her computer. And they did. She said she'd call me back later.

She called me back later and said that the doctor has to review them at Wandra's computer and that he wanted to see me and the first available appointment was next Wednesday, April 28. I said yes and took the appointment. I felt bad because we have a lot of stuff going on at work that I amm needed for, but I knew I had to take it. So there, prayer answered... thank you for praying... the doctor will see me now.

We have to be there at 7am, so we are planning to drive the three hours Tuesday evening and stay at a friend's house in the Houston area. Those of you that know me well know that I am not a morning person. There's no way I can get up at 3am to be there by 7. NO WAY! :-) They sent us some forms to fill out and instructions on where to go when we get there.

So my foot is in the door now. We just need to wait and see what they see in my head. Hopefully nothing. Wait... dang.

Getting Reacquainted With Cancer

As you might know, I had an abnormal MRI in Feb. We are not sure exactly if there is anything wrong. I was being followed by the Army hospital in San Antonio, but had a relatively unpleasant experience when I saw a neurosurgeon about this last MRI and my confidence in their care plummeted. Care at a military facility is free, but I was willing to spend some money to get better care. Last week Holly and I were looking at the slim pickings of neurosurgeons in Austin when I discovered that the doctors at the MD Anderson Cancer Center in Houston also take my insurance. I called them up last week and was told to gather as much information for them as I could and overnight it to them. I burned a few copies of MRI CDs and some pathology and radiology reports and sent them off yesterday. I also wrote the doctor a letter that I want to share with you. For those of you that are not up to speed with my history, it is a quick overview:

April 19, 2010

FEDEX PRIORITY OVERNIGHT 793461030701

Dr. Frederick F. Lang, Jr., MD

MD Anderson Cancer Center

1515 Holcombe Blvd

Houston, TX 77030-4000

Attention: Wandra R 7.1651

Dear Dr. Lang,

Thank you for reviewing my case.

I am a resident of Austin, Texas. I was living in Austin when, as a US Army Reservist, I was deployed to Washington, DC in May 2004 for an unexpectedly long time. In November 2005 I began to feel involuntary jerking in my right arm. I was being treated for a back injury at the time and my primary Doctor at Bolling Air Force Base thought that it might be related to the pain medication I was taking. It was not until February 2006, when after my back treatment was complete and the jerking continued, that my doctor referred me to a Neurologist at Andrews Air Force Base. The Neurologist performed an EEG which was normal and prescribed an MRI. I went to the National Naval Medical Center (NNMC) in Bethesda, MD for my MRI in the morning and the Neurologist set me up to see a Neurosurgeon in the afternoon. The Neurosurgeon set me up for a craniotomy to be performed in several days.

My surgery was performed at NNMC on March 3, 2006. The tumor was identified by the Armed Forces Institute of Pathology (AFIP) as a grade II Ependymoma. The surgery went well with no complications other than the fact that the right side of my body was completely paralyzed. The hemi-paresis lasted ten days and NNMC transferred me to the National Rehabilitation Hospital (NRH-MedStar Health) in Washington, DC. After a little speech therapy, moderate occupational therapy and extensive physical therapy, I was able to walk again with a cane and was discharged on April 4, 2006. At that time, my right side was still very weak and the muscles from my ankle and below had not begun to move yet.

I participated in outpatient physical therapy for several more months and eventually gained limited ankle and toe movement. One month after being discharged from NRH I began radiation therapy at NNMC. I went to NNMC every day for over a month and received the fullest dosage of radiation I could get (as I understood from my Radiation Oncologist.) Also, while in DC, I suffered from three tonic-clonic seizures. All three started on my right side with my big toe; it felt like I was having a cramp in my foot with my big toe and then progressed to a full seizure. These have been controlled with anti seizure medication (Keppra 500mg AM and 500mg PM / Tegretol XR 400mg AM and 600mg PM); my last seizure was April 2007. Although my seizures have been controlled, I have always had twitching of my right foot’s big toe and also of the muscles on the left side of my right foot… consistent with the focal point of the seizures I did have. My right calf still exhibits quite of bit of muscle atrophy and my writing has never really gone back to what it used to be.

The Army insisted I stay in the beautiful Washington, DC area at Walter Reed Army Medical Center (WRAMC) to determine my disability status and after almost a year I was finally determined to be 70% disabled by the VA and the Army placed me on the Temporary and Disabled Retired List (TDRL) with 100% Army Disability. I finally returned home to Austin, TX in March 2008.

While in DC my MRIs were performed at three then four month intervals. Back in Texas, being followed by Radiation Oncology at Brooke Army Medical Center (BAMC) in San Antonio, I was only having MRIs every six months. All MRIs through July 2009 were normal showing no changes. My last MRI was taken February 2010 and the Radiologist report indicated a .7mm change in size of a mass and I was advised to follow up with another MRI in three months. I did receive a referral to a Neurosurgeon at BAMC who we did see, and he did look at the images, but he seemed more annoyed with us than anything and told us to have the other scan in three months and then come back and see him.

I was content to follow those instructions, but about three weeks after seeing the neurosurgeon, I started noticing that the twitching on my right foot was more forceful and moving for a longer period of time. The twitching has also moved up my right leg and is now present in my lower calf, upper calf behind my knee, right of my shin, above my ankle and seems to be moving to my hamstring. The twitching feels like someone is tapping my body, or feels somewhat tingly. It is a sensation I have not had before and that is what concerns me. With this new activity, I decided to only trust my life with the professionals at the MD Anderson Cancer Center.

Enclosed you will find my last four MRI radiologist reports, the pathology report from the tumor and four CD containing MRIs from 2006 through the most recent in February 2010. Please note that the two oldest CDs will not work on Windows Vista or 7, they only seem to work on Windows XP. The newer CDs will work on any Windows PC. You may contact me with any questions at --- or by email at ---.

I look forward to working with you to seek answers and solutions to this possible recurrence.

Sincerely,

Roger J. Mommaerts, Jr.

SFC, USAR, RET

I saw that the package was delivered before noon. I didn’t get a call from them today and decided to call them around 3pm but was only able to leave a message. I don’t know where we go from here. I don’t know if they will ask me to come to Houston to run tests or ask me to just have my next MRI with the Army at the end of May. I really just want to go to Houston and have them test the heck out of me to determine if there is anything wrong or not. I’m not going to say that I’m not scared because that would be a lie. I have cried a lot at work and at home in my wife’s arms thinking about all of this. But with MD Anderson as a possible solution, I feel a lot better. I try to keep my mind off things by working and spending time with Holly. There sure are a lot of I’s in this post, so I’m going to stop for now and just post it. When they call me tomorrow I will let you know what they say. Right now we just need your prayers… prayers for peace and for healing. And also please pray for my friend and co-worker Jay. We sit across from each other and both of us are going through quite a bit right now. But I think he needs more prayer than I do. He has lung cancer now which is a reoccurrence from when he had cancer in a different part of his body five years ago. So, yes… prayers for healing big time.

Thanks,

-Roger

New Location for the Blog

Hi everyone, as you may have noticed, the blog has moved to a new address. We host our blog with Blogger, who is owned by Google. They were no longer supporting the way we publish our blog posts so we had to move it to a different server. This really should not matter to you. If you subscribe to the emails you will still get them.

We don't post a whole lot on the blog these days, Facebook and Twitter are just more convenient. If you want to follow us there you can find us at the following addresses:

• Facebook Roger
• Facebook Holly
• Twitter Roger
• Twitter Holly

That's all for now... more soon!

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