24 Week Praise Report & Prayer Request

Tuesday, March 6, 2012, we had the follow-up ultrasound to my 20 week anatomy scan where marginal placenta previa was discovered. They informed us I most likely have vasa previa. You can Google it for more info (warning you there's a lot of scary stuff out there), but it basically means my placenta is attached to the uterine wall too close to my cervix but there are also fetal blood vessels going over the cervix. We were able to see the placenta still very close to the cervix and the blood flowing through the fetal vessels in the ultrasound with color Doppler. It also means the placenta and blood vessels could rupture at any time and if that happened I would have to have an emergency c-section asap to save my life and the life of my baby. Since I am basically a ticking time bomb I have been put on pelvic rest for now and have had to cut all my activities, work, volunteering, etc in half plus cut out all physically straining activities until I see a maternal fetal medicine doctor this week to confirm it. So no prenatal yoga, no exercising, no walking, no lifting, no dancing, no nothing, until I see the specialist hopefully this week. But most likely I will eventually be put on bed rest if any slight bleeding occurs or hospital bed rest if more significant bleeding occurs. I found a really good article from the April 2006 issue of the journal Obstetrics & Gynecology. Vasa previa is covered on pages 11-13 of the article. Warning, there are graphic images. Peruse it at your leisure. I found it to be one of the better sources of information on vasa previa out on the Internet.

Of course there are lots of super sad stories on the Internet about vasa previa ending in death which is why we are so glad this was caught now as most people go undiagnosed with this until it is too late and they find out under horrible circumstances. I have been reading up a lot on vasa previa and it seems like it goes undiagnosed because the placenta is not examined during routine ultrasounds during pregnancy. We have to thank God that examining the placenta during ultrasound is policy at our OB/midwife practice or we would not have known until it was too late. That is a huge blessing and praise right there. But I have to really take it easy which is going to be hard for me but I will manage if it means saving the life of my baby and myself. They would like for me to go to as full term with this pregnancy as possible but I will definitely have an early scheduled c-section at around 35 to 36 weeks as I can not go into labor or the placenta and blood vessels will rupture from the contractions. Hospitalization in diagnosed cases occurs at week 30 to 32 and steroids are administered to help the babies lungs mature. Of course, all of this is dependent on what the specialist says when we see her hopefully this week. She will do a more in depth transvaginal ultrasound to evaluate and confirm the diagnosis then she will set a course of action such as immediate bed rest, etc. I have pages of questions for her and my OB especially if the diagnosis is correct and we have to look into a scheduled c-section.

Another praise is the baby is looking great. She is moving like crazy inside me. It's kind of weird and neat at the same time. The ultrasound showed her heart beat is great (141 bpm), they were able to confirm the one item she was hiding with her hands during the anatomy scan and it showed she is where she is supposed to be in weight and size. Previa is also known to hinder the size of the baby as the placenta can’t get the blood supply it needs over the cervix as that’s not the ideal place for the placenta to be attached. But she's good. Thank you God. So we are just hoping she continues to grow well and healthy and we make it as far as we can, to the scheduled c-section and not an emergency c-section. Please pray for this and for us to have peace and comfort and for me to not go crazy taking it easy especially if I get put on bed rest. One more neat thing we got to see at the ultrasound was Lady Mommaerts yawning as you can see from the image below. I hope she loves to sleep like her momma and daddy. That or she was taking a big gulp of amniotic fluid. She may be a good eater like her parents too. :) ~ Holly

Prayer Requests Leading Up To Surgery

We have been asked a lot lately how people can pray for us leading up to Roger's surgery on Thursday. We had a great discussion/cry last night about how we're feeling, etc and I wrote many things down in my journal as we were discussing, sharing and crying. Then today at our weekly neighborhood Bible study, our neighbors asked to pray over us and how they could pray for us. So I grabbed the notes I wrote down in my journal and read it out loud to everyone. It made a great list to email to our community group also so I decided to share it here on the blog so everyone knew what we were feeling and facing leading up to the surgery. So here you go. We are also testing to see if the changes Roger made to the blog work so when we update the blog this week during the pre-surgery process, day of surgery and post-op you can get the updates not only on the blog but immediately on both of our Facebook and Twitter accounts. We'll see if this works. Thanks for the prayers. We really appreciate all of you. ~ Holly

Please pray for:
-peace for both of us during this week, surgery day & recovery
-Roger's fear of dying (see next item), not being faithful enough & losing more movement
-protection from satan's lies
-Roger's anger to be taken away from not being faithful enough, feeling like he wasted time gaining strength before the surgery
-Roger to not be complacent with partial paralysis, to never quit, keep fighting & work hard
-God to help me (Holly) to be Roger's cheerleader, therapist, etc.
-strength for both of us to get through this & always go back to God with praise & glory
-all the doctors, surgeons, anesthesiologist, assistants, nurses, etc.

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.

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

Prayer Requests For Mexico

We're leaving this morning for our mission trip to the orphanage in Mexico. There are about 15 of us going from our church. I've briefly listed some prayer requests below. We'd really appreciate you praying for us. Thanks and see you in a few days.

Please pray for:

• our safety driving there and back and across the border, in the heat, working on the repairs and with the food and water down there
• us to be able to bless this orphanage as best we can, for us to have joy while we work and fellowship and to have peace with the repairs we can't get to this time
• the children of the orphanage and the couple who run the orphanage to be blessed by us and for them to see God's love in us
• us to be blessed by this service and for our fears and weaknesses to be drown out by the Lord's provision
• (this is Roger chiming in) the Lord to take away my inhibitions when it comes to speaking Spanish so that I can be an effective communicator with the ninos

We might have a chance to blog while we're down there so check back. Adios!

Praise And Prayer Request

After class was finished today, I called my mom to tell her what I made on my test since I wasn't going to be stopping by their house tonight but going straight home since I'm flying to DC early in the morning. But before I could tell her I made a 93 on the test (yeah!), she said my dad spoke to his doctor this afternoon about his circulation and that he needed to go to the emergency room. They were getting ready to leave so she handed me over to my dad. My dad told me that he has been really cold, his fingers were numb and he could barely lift his arm. So he called his doctor but they were gone for the day. He left a message with the answering service and his doctor called him right back. He asked my dad if he had a few specific symptoms and my dad had exactly what he asked and told him he could see him tomorrow but preferred he go to the emergency room. I was a little torn if I should go to the emergency room or go home to Austin. My dad told me to do what I had planned to do that he'd be fine. But he always says that. And every time I go to DC or am in DC, something happens with his health. So I didn't know what I should do. My sister wanted me to go to the emergency room but I didn't think it would help. My mom has a cell phone now and could call us if needed. I called my brother who lives in Bryan and he said he would call my mom and find out what was up as soon as he got off work. I called Roger and talked to him about it. I just needed to express all the different options and think about it out loud.

As I was pulling out of the parking lot on campus, I thought about my mom trying to get everything done at the house before she left so I called her back to see if they wanted me to go do that so they could just go to the ER. They were already on their way to the ER. My mom was driving so she handed me over to my dad and I asked him if he wanted me to bring in the chickens or pick up eggs or something. He said it was too early to bring them in but I could pick up eggs for them. So I drove to their house (it's on my way home to Austin) and went inside to get a bucket for the eggs. I knew there would be more than my jacket pockets could hold. As I was walking toward the chicken coop with that white bucket, the chickens started coming toward me in droves. There's over one hundred I think. I know my parents feed them to bring them in, but my dad said it was too early. I thought, these girls are hungry. So I went inside both chicken houses and I could barely move because I was surrounded by chickens looking for a hand out. I collected a bucket full and another half bucket of eggs and called my mom back to ask her if I should feed the chickens since they were swarming me. She said yes and told me the mix. My dad has a concoction of three feeds. I know there's a method to the madness.

So I fed the chickens and the goats. They were singing too that they were hungry. The hogs have an automatic feeder. It was kind of funny. I haven't done that kind of farm work in a while, animal husbandry. It reminded me of when I lived at home. I called her back to tell her I was done and she told me they forgot all my dad's medicine so I had to go inside and read all those bottles off to her so she could write them down for the doctors. Then I left to drive to Austin. I was starving so I stopped at the McDonald's in Caldwell. I know, disgusting, but I wasn't going to make it to Austin. Of course, the french fries were delicious and the first few bites of the burger weren't bad, but then I began to start tasting grease and I had to make myself finish it. I don't normally eat McDonald's unless it's absolutely necessary and now I remember why. Yuck!

Once I got home I called my mom to tell her I was home and asked her what was going on with my dad. He's anemic, his hemoglobin and hematocrit were low. They gave him a pint of blood and were going to give him vitamin K. I asked her to inquire about that because on Warfarin he's not supposed to have a lot of dark green vegetables because they are high in Vitamin K and mess up the drug in his system. So she asked about that and they said his blood was not clotting enough. Okay, I'll take their word for it. I don't know about this stuff. And they were going to do a CT scan to see where he might be losing blood. I asked her if they checked his digestive system since he's been having so much gastrointestinal issues lately and Dr. Bond had asked my dad specifically about the condition of his stool, I figured that had something to do with what's going on. Again, I'm not a doctor. So she asked and the nurse said the CT would show them everything and whatever they found they would address. I talked to her again around 10pm and she was going home to put up the chickens (she should have let me do it when I was there earlier) and feed anything else that needed to be fed. I forgot about the horses when I was there. And she was going to stay home and go back up early in the morning. They admitted him and were taking him to do the CT when she left. They couldn't do anything until they saw the CT results. But if he had a tear or something serious, they wanted him to be in the hospital already.

My mom is going to call me in the morning since I'll be up early to be at the airport around 6am. Yes, that's early for me. I'll let you know the latest tomorrow. Please pray for my dad to get the care he needs. This is going to sound cruel, but we're country folk so we're more realistic than most, my sister and I had a long conversation tonight about my mom being stuck with the farm all by herself if something happened to my dad and all the unfinished projects that would be too much for her. He does not have life insurance and it would be really expensive for him now. I guess we're going to have to have another sit down with my dad about making sure things are taken care of for my mom once he's gone. He knows as well as we do that he's not going to live much longer. He reminds us every once and a while. So please pray for provision for my parents and for all of us to be able to help my parents in any way we can. I still feel strange going to DC knowing my dad is in the hospital, but I need to be with my husband. I know my dad understands. I can't help him or anyone else, if I don't take care of myself.