Merry Christmas!

We completely forgot to post our Christmas card picture on the blog this year!

Week Fourteen Check-up

We had our 14 week check-up yesterday afternoon. I asked all the questions I had written down and got all the answers I needed. The midwife measured my belly and it showed I was indeed 14 and a half weeks pregnant. Due date is still 6/21/2012. Then she brought out the doppler heart rate monitor to listen to the heart beat. I was so excited to hear the heart beat. Especially after our ER visit during week 8, it was great to hear there's still a little one growing in there. So Baby Mommaerts heart rate was 150 bpm and you can hear it above (The date is wrong on the video. It should be 12/28/11.). I thought I was going to cry but couldn't because we were laughing too much with the midwife about how all we could hear was my stomach digesting trying to find the heart rate with a home heart rate monitor we borrowed from Roger's sister. But I did get teary eyed when we were discussing it on the drive home. It was just so cool. And because of what I had been told earlier that day I decided to marvel in it.

I went straight to the appointment from a prenatal yoga class I go to every Wednesday. I really enjoy that class because of the physical benefits from lower back pain, etc and from the friendships I have made with the instructor and the other mommies there. We start the class sitting in a circle and share our names, gestation week and what we are currently experiencing good and bad. That class was the last day for one mommy who is having twin boys next Monday. She has been so nice and inspiring to me and I feel so blessed to have been able to practice with her. Since it was her last class, this mommy shared how she found something every day to marvel at during her pregnancy even when she was at her most uncomfortable. She told us to marvel at the miracle that was happening in our bodies, to get inspiration from other mommies particularly in this class and to revel in how special other people treat pregnant mommies. It was just so wonderful. She has been so extremely positive and I appreciate her so much.

Our next appointment is set for February 9th and it will be the anatomy scan where we can find out the baby's gender. We are going to find out the gender but we aren't. We have decided to not find out at the ultrasound but to find out with our family and a few close friends at a gender reveal party the Saturday following the ultrasound. Any reason to have a party right? ~ Holly

First Aid & CPR Training

We recently attended the second training in a series of trainings, events, tests, etc to become volunteers at our church's transitional home for girls who will age out of the foster care system. The training was for first aid and CPR. It was great. We learned so much and really enjoyed the class. It was a great refresher from what we learned in the Army many, many years ago. A lot has changed since then. And the best part for us, it included infant first aid and CPR. Which was great! We learned so much we did not know about infant care and it will come in very handy to know next year when Baby Mommaerts arrives. As you can see from the image of Roger to the left, we used life size infant dolls to practice infant CPR. They were very realistic in weight and size. We both feel more confident knowing infant CPR. We highly recommend all parents and parents-to-be attend first aid and/or CPR training and becoming certified. We were looking forward to the training going into it and were very, very excited when we completed the training.

Four Ultrasounds In One Week

Well, this has been one roller coaster of a week. We ended up having four ultrasounds this week. Two planned and two unplanned. Let's start with the planned ultrasounds. You should know by now we don't hold back with details so get ready.

Monday was our first visit with the OB/midwife practice we are going to until I can get the birthing center contracted with Tricare and transfer. As you can see from the ultrasound image on the left we are having a little alien. All kidding aside, it looks the way it's supposed to at this point. The size of the baby indicated 8 weeks and 3 days old so my due date is still June 21, 2012. We didn't get to hear the heart beat but we could see it and it was strong at 150-160 beats per minute. We were excited to see the baby and learn the heart beat was great and everything looked good. They were also able to see an extra large corpus luteum cyst. Why do I always have to be above average? They asked me if I knew I had a tilted uterus to which I told them I had been told that many times. They also said that was not a big deal and wouldn't affect labor. We really had a great time during the ultrasound. The tech was so nice and funny. We were laughing so much. We'll definitely try to go back on her days for our next ultrasound. I will admit there was a tiny part of me going into the appointment that thought they were going to tell me during the ultrasound they couldn't see anything. I need to pray daily during this pregnancy against these attacks of lies. The labs all came back great except my urine tested positive for Group B Strep. So I get to take some antibiotics for that now and get tested again between 35-37 weeks. My next appointment was set for six weeks away.

Our next ultrasound was on Wednesday at the fertility doctor's office. Even though God allowed us to conceive naturally in the end, he does blood work at the first positive home pregnancy test and an ultrasound before he releases you to your OB/midwife. And even though we told his office we had already called our OB and set up our first appointment with them, their policy is to do the ultrasound to make sure everything is okay with the pregnancy and say good bye. It was a great visit with Dr. Kavoussi as he and his sons are the nicest guys in the world and it was great to share the excitement of our pregnancy. We all marveled at how shocked we all were to have conceived naturally. He was so excited for us. It was really nice. And another awesome thing about the visit was we got to hear the heart beat! It was so cool. We totally didn't expect to get to hear it so we were kind of startled by it when it started. Roger was shocked silent. I got teary eyed. It was great. As you can see from the ultrasound image above it shows the heart beat and Dr. K said it was 160 so very strong. He was pleased with how everything looked and we were on our way.

Now for the unplanned ultrasounds. Warning: it's going to get gross people. Wednesday night we went to the NAMI Walk Austin awards ceremony at Zilker Park Clubhouse as our team captain invited Roger and I since he was the highest fundraiser on our team. It was a great evening with delicious food meeting nice people and an amazing view of downtown Austin at night. On our way home we were going to stop at Walgreens to pick up my Group B Strep antibiotics. As I was driving I felt wetness in my under pants and it got worse as we drove. I joked with Roger I hoped the not being able to hold your urine hadn't already started but I wanted him to come in with me to the bathroom anyway. When we pulled into the parking spot I opened my door to get out and there was blood running down my leg, a good pool of blood in my seat and all over the back of my dress. Fresh, bright red blood which is not good. So I wrapped my jacket around my waist, waddled into the Walgreens bathroom and sat down on the accessible stall toilet. As I pulled my panty hose down a large amount of blood came rushing out then a big flat blood clot fell out into the toilet. Sorry, I warned you it was going to get gross. I said loudly to Roger, "I hope that's not the baby" and told him to call 911. The ambulance came very fast. While Roger was outside of the bathroom directing the paramedics in I prayed for God to take care of me and the baby and to give us peace. When the paramedics came in they asked me all the questions, took my pulse and blood pressure. They were shocked my pulse and blood pressure were so good considering. They were very nice and calm and told me the truth of what it could be but for some reason I didn't react in anyway. After they got me on the gurney, the other paramedic looked in the toilet to calculate the amount of blood and check out the blood clot. They told me in the ambulance it looked like it was just blood clot and nothing else and it didn't look like it was a miscarriage but the ultrasound in the ER would confirm everything. The paramedics were mainly concerned that there was no more bleeding for my safety. Roger drove my car home to grab me some clean clothes. I arrived at the ER at 9:30pm and it was a long, long night of waiting and wondering. Although Roger kept saying he didn't think it was a miscarriage over and over again. He examined the blood clot very well I found out later so he was more than confident it was just blood. They did labs first and a couple hours later did an ultrasound. The ultrasound tech told me the heart beat of the baby was strong so that's how I found out it wasn't a miscarriage. So Roger was right. About 2:00 am the ER OB did a pelvic exam and he told me there was still some blood from the cervix but it was closed so he wasn't concerned about a miscarriage and told me the ultrasound tech had also seen a fibroid. I was shocked by that because I had two other ultrasounds this week and they didn't say anything about a fibroid. He told me he was going to go ahead and release me because the radiologist was not calling him back regarding the ultrasound results and he didn't want us to have to wait 2-3 hours longer. I was more than ready to leave at that time. I was starting to lose it truthfully. There were periods of 1-2 hours when no one checked on us. We asked for water at one point and never heard back from them. My IV was killing my arm and I was so uncomfortable I couldn't sleep. We even turned off the lights and tried to sleep for a while but it was hard. It was just a completely unpleasant experience all around. I told Roger when I was sitting in the pelvic exam room that when I realized it was after 2:00 am I started to get really mad and if they didn't come back in 15 minutes to do this exam I was going to walk back to my room and walk out. I came very close to pulling a Harvey Sr. My dad who notoriously hates hospitals, makes nurses and doctors scared to death and has actually walked out of the hospital before.

So I was put on bed rest Thursday and told to follow up with my OB. I had called my OB about 10:00 pm at the ER before they had done anything to let them know what was going on. I spoke with a midwife who was on call with a laboring mother. She told me what they would do at the ER and to call her back directly on her cell phone no matter what time it was to tell her the results. She was so nice and calming. So I called her back about midnight with the ultrasound results as I thought we would be leaving soon since the ER OB told me he probably wasn't going to need to do a pelvic exam. She told me to make a follow-up appointment the next day with one of the OB's in the office and to follow the ER's discharge orders for the rest of the day. When I woke up on Thursday I called to make the appointment and was scheduled to come in Friday at 11:30am. All day long on Thursday Roger kept saying, "IF you have a fibroid" as his response to all our discussions about the fibroid. He said he really didn't think I had a fibroid. I was like, "Whatever Dr. Mommaerts." So this morning I went in and during the ultrasound they could not find anything other than a baby with a healthy heartbeat and that same extra large corpus luteum. They couldn't see a fibroid or any other indicator of why there was so much blood and the blood clot. They could see large blood vessels in the uterus which they said was normal during pregnancy. They thought maybe one of those or a cervical blood vessel could have ruptured but since there was no more bleeding they wouldn't be able to tell for sure. They said my cervix looked good but was very long. Again, always the over achiever. They did see my uterus was more than tilted and almost horizontal. But other than those things there was no indication that anything had even happened and there definitely was not a fibroid. Again, Roger was right. They also let me know they never received the radiologist's report from the hospital. I was not surprised. I won't be going back to that hospital again unless I am unconscious and right next to it.

Our community group from church which are very close friends of ours and our neighborhood group of friends all started praying for us and rallying around us Wednesday night while we were in the hospital. It was so nice to only have to contact a few of them and they got the word out and got everyone praying for us. We definitely felt covered in prayer, had a lot of peace and knew God was going to take care of everything. Obviously Roger knew God was protecting me and the baby very well. And I will start praying the rest of this pregnancy is boring and uneventful! ~ Holly

Is this for real?

So it's been a couple weeks since we found out we are pregnant and I have felt great. So great I didn't even feel pregnant. I even wondered if it would take hearing the heart beat at my first doctor's appointment on November 14th before I believed I was really pregnant. Then Sunday I stayed too long at the church garage sale and was so exhausted Sunday night I had to take a nap and still felt exhausted when I woke up. Tuesday I was driving home and felt like I could fall asleep as I was driving. And Wednesday I had what I thought was my first bit of nausea. For so long I didn't think getting pregnant would ever happen. And tonight as I was thinking about how hungry I was, again, I was like, "Wow, this is for real. I have a baby growing inside me. omg." :)

~Holly

Positive

As you can tell by the Pregnancy Ticker to the right of the blog, we're pregnant! We got the call late Tuesday afternoon. Actually Roger got the call as I just got out of the shower and was brushing my teeth. So he took the call. I could tell by his smile that it was positive. I almost spit out my toothpaste smiling so much. It was a very exciting moment which included hugs, kisses and tears. Roger had a shocking moment when he realized he was going to be a dad. He even asked if he had to start being serious! If you know Roger, you know his humor.

They told Roger to tell me to go in again on Wednesday for another blood draw. And our fertility doctor's office called me back this afternoon to tell me the results. In Monday's draw the hCG was 97. Wednesday's draw was 236. Generally the hCG levels will double every 72 hours. They also told me they would like to do an ultrasound in four weeks then they will release me to my OB/midwife. So I set an appointment with them for November 15th. I had already called the midwife practice we are using to let them know and they set an appointment for me on November 14th for my first appointment which will include hearing the heart beat. So Roger will be attending that appointment. We will also tour the "birthing center" at The Women's Center where the midwife practice assists with births. I use the term birthing center here lightly because I won't believe it until I see it. We will also tour another birthing center really close to our home. Our insurance does not cover home birth or birthing centers so The Women's Center is covered because it's inside a hospital but I need to tour it first to see if I will be comfortable birthing there. So more on that after we take those tours.

Thanks again so much for all the prayers. It was kind of funny at first. We couldn't believe we were pregnant even though this is what we have been hoping for and working towards. I also think it was cool how God allowed us to conceive naturally after all. I had my moments when I didn't think it was ever going to happen. I really love how God "surprised" us. It was pretty cool. When I think about that it makes me feel so loved by Him that He would give me that excitement back. It was hard at times to keep hope, but His word and all our and your prayers helped us. So thank you so much from the bottom of our hearts. We love you.

Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise. Hebrews 10:23 NLT

Waiting.

Wait for the LORD; be strong and take heart and wait for the LORD. Psalm 27:14

So I have a confession to make. I hadn't called our fertility doctor back since the last IUI in July. As you read before, I was just not feeling it. But I finally decided a couple weeks ago I would try again and call him on Day One. Well, we were in Galveston this weekend after two days in Houston at MD Anderson getting Roger's latest MRI and labs. By the way, we got good news. Roger's scans showed no new tumor growth and his neuro-oncologist decided Roger should wait another three months to do radiation. We were about to embark on the Colonel Paddlewheel cruise at Moody Gardens when a trip to the bathroom revealed I had started. So I told Roger I would call Dr. K on Monday morning to let him know Saturday was my Day One. I also told Roger that Dr. K always asks me to take a home pregnancy test to make sure I am not pregnant before I start any fertility drugs so I would take one first thing when I woke up so I could tell him on the phone I already took one and it was negative and we would not have to wait to start the process. Just a side note, after that initial revelation I had started, there was nothing else the rest of the weekend. Since my cycles are so light I didn't think much of it.

I put the home pregnancy test out on the counter in our bathroom so I would remember in the morning when I woke up. I forget lots of stuff overnight during my sleep and I knew I would need some kind of reminder. I took the test first thing and watched as the lines started appearing. I was completely expecting it to be negative like all the other tests I have taken before but there is always that little hope in the back of my mind that by chance it might actually be positive. Of course I always play it off like I know it's going to be negative and when it is I respond like, "Yep, negative. Just like I thought it would be." I watched the lines and when it seemed like a faint plus was appearing I actually thought to myself, "Okay Holly, are you seeing things that aren't really there. Don't let your mind think you see something that isn't real." I placed it on the counter to wait for the rest of the two minutes you are supposed to wait. And I still thought I could see a plus forming. Roger got out of bed and walked into the bathroom. I turned to look at him and pointed at the test sitting on the counter and said to him, "Do you see what I think I'm seeing?" To which he responded in the affirmative.

I have never seen any thing other than very clear negative results on home pregnancy tests so I had no idea what a positive test result would actually look like. I still wasn't sure if this was positive. Every time I walked into the bathroom I looked at the test on the counter and doubted what I was seeing. I just had no idea if what I was seeing was good enough. And every time I looked at it, the lines seemed to get fainter and fainter. I even did a Google image search for home pregnancy test results to see if anyone out there in the world wide web had posted pictures of their positive test results so I could compare. I found one image of the same type of home test I took and their results looked similar to mine. This gave me some more reassurance it could be real.

Roger and I talked about what to do next. I knew I had to call my doctor regardless but decided to consult with a dear friend first. I took a picture with my phone and texted it to her. Not even 30 seconds later my phone rang. She said even with her crappy little phone it looked positive to her and I needed to call my doctor. Dr. K told me in the past that when I do get a positive test whether it's from natural conception or IUI he would order blood work every other day for about a week to make sure all the numbers were replicating correctly to make sure it was not a tubal pregnancy or anything else before he released me back to my OB/midwife. So I called Dr. K's office and they ordered a blood test and told me to go in to the lab next door any time during the day and I would have results by the end of the day.

So I made it to the lab about 11:30am Monday morning and STAT was written all over the lab order. I left and ran all my other errands plus went to my physical therapy evaluation for my knee issue. By the time I made it home from the grocery store, it was getting closer to 5:00 pm. And I had still not heard from the doctor's office. I called them right after 5:00 pm and no one answered. My bad for waiting so long but I didn't want to be one of those women that calls every hour to ask if the results are in. So I called this morning after that dear friend called me also annoyed I hadn't gotten a call from them yet. The nurse told me the lab sent the results in so late yesterday that Dr. K was already gone and he would be in this afternoon to review the numbers then they would call me. So we get to wait a little longer before we find out. It is still exciting none the less. Will update as soon as we get a call from the doctor.

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

Transitional Home-Foster Parenting

Our church is partnering with Caring Family Network and LifeWorks to develop a transitional home for girls getting ready to age-out of the foster care system. This house will be a place that offers the comfort and acceptance of family and offer community. It would have the environment to inspire the girls to continue with their state-sponsored education through college, in order for them to create a future for themselves that would other wise seem unattainable. We knew we would like to volunteer at the transitional home and in order to do so we will need to go through foster care training. Other options with this training are to become respite care for foster children and families, foster family support or to become foster parents and/or foster adopt. So after an orientation meeting a few weeks ago, we decided to go through the whole process because we have felt for some time that we would love to also adopt if it was God's will. God has given us a desire to be parents and we will follow his leading as to how that will happen. The six training sessions begin on November 3rd. We are excited to see where God leads us in this and what adventures and experiences he has in store for us. If you would like more information about the transitional home, please see the Restore Communities blog post about prevention.

Central Texas Wildfires

We have been asked and just wanted to let you all know we are safe from all the wildfires you are hearing about on the news. They are close but heading in the opposite direction. New fires keep popping up. We are being advised to avoid outdoor activity due to all the smoke. The smoke can be seen from space. So far four people have been killed, over 25,000 acres have burned and over 1,000 homes have been destroyed. And this information changes by the minute.

For more information about the wildfires check out the news coverage from YNN Austin.

We also wanted to share a website where you can find out how to help the fire fighters and victims of these fires whether you live locally or not: Wildfire Relief

Please pray for all the fire fighters, victims and rain! Thanks.

I'm walking in a 5k, and I can't walk very well or far...

Dear Friends,

I am participating in an upcoming event that is both very important and very exciting to me.  NAMIWalks, the signature walkathon event of the National Alliance on Mental Illness, is being held in Austin, TX at W. Riverside Drive at S. 1st Street on October 8, 2011.

Why am I walking? First of all, as you know, I recently had brain surgery for the second time to remove a brain tumor. The second surgery left my right leg much weaker than expected and walking can be a chore at times. I have been going to physical therapy weekly since the surgery and am getting stronger day by day. I feel that I need a goal to reach for and I have decided that exercising to prepare for a 5k walk is just what I need right now. I don’t know if I’ll be able to finish the walk, but I am going to try. I am walking with my coworkers (who are mental health professionals) and my friends, and I know they will help me get through it.

I would like to ask you to come and walk with me or to donate to support my participation in this great event. Visit my personal walker page to sign up: http://www.nami.org/namiwalks11/TEX/rmommaerts. It features a link to my team's page where you can see who else is walking with me. There is also a link so you can donate directly to me online. Donating online is fast and secure, and I'll get immediate notification via e-mail of your donation.

NAMI, the National Alliance on Mental Illness, is the largest education, support and advocacy organization that serves the needs of all whose lives are touched by these illnesses.  This includes persons with mental illness, their families, friends, employers, the law enforcement community and policy makers.  The NAMI organization is composed of approximately 1100 local affiliates, 50 state offices and a national office.

The goals of the NAMIWalks program are: to fight the stigma that surrounds mental illness, to build awareness of the fact that the mental health system in this country needs to be improved, and to raise funds for NAMI so that they can continue their mission.

NAMI is a 501(c)3 charity and any donation you make to support my participation in this event is tax deductible.  NAMI has been rated by Worth magazine as among the top 100 charities "most likely to save the world" and has been given an "A" rating by The American Institute of Philanthropy for efficient and effective use of charitable dollars.

Thank you in advance for your support.

Sincerely,

Roger Mommaerts

Blah.

Blah, blah, blah. That's pretty much how I am feeling about all this fertility stuff. I think the hardest part of infertility are the ups and downs. It's one thing to not know what to expect when it comes to trying to get pregnant with issues, but I am so tired of the emotional ups and downs. It sucks. I can go from being happy and content to no joy and wanting to quit it all the very next minute. I want to be excited about trying to get pregnant but knowing how much it sucks when you find out each month you are not makes you not want to invest emotionally to save yourself from the pain. But dog gone it, I want to be excited. I don't want to get so emotionally drained that I quit or lose joy for this. It's this back and forth and up and down that really, really sucks. I'm sure it's the same for everyone struggling with fertility, adoption, you name it. As our pastor's wife Jen said in her blog this week about her son coming home finally from Ethiopia, "If you are confused right now, if your story isn't going the way you thought, or if you're tangled up in the messy middle where hope is deferred, dear reader, it could just be that God isn't done yet. Your story is not finished." I know God has a plan for us and he will see it through. During this funk I need to do the one thing I should never cease doing, pray. To borrow scripture from a friend's journal:

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. Hebrews 4:16

Negative

Well, there is it. Might as well get straight to it. I knew last week it was going to be negative. I started to have premenstrual syndrome symptoms on Thursday and Friday and it just kept getting more clear over the weekend. And last night was the clincher. Full on menstrual cycle. Dr. K ordered me to take a pregnancy test regardless so I took one this morning knowing it would be negative and it was. Of course I am disappointed. Each day the PMS symptoms occured Roger and I would talk about it and I would have a little cry. I think that's the only reason I am not down in the dumps today. I would be sad because not only did the symptoms mean I wasn't pregnant but it also meant I would have to keep trying. Of course it would be super easy to be pregnant and done with all the drugs, blood tests, ultrasounds and IUI. But it can't always be easy. Life isn't easy. But I do know God is still right by my side going through this with me. He told me so just this morning. After I tested and was reflecting on my feelings I started talking to God about it all. That would also be called praying. I felt comfort in knowing he's there for me always. I even thought about what scripture I should read about God giving me strength and encouragement to get through the tough stuff. So I headed to the office to grab my phone and text my sister with the news. Of course I sat down at the computer to see what email I had to start my day and on my monitor the first thing I saw was my Bible verse of the day. I am always intrigued to see what it is as God has used that Bible verse of the day widget so many times to give me the scripture I need. And today was Isaiah 41:10.

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

How appropriate. Just what I needed to read. It's still going to be a great day. Dr. K's office just called me back. Since the chemo drugs will be out of Roger's system next Monday, he has ordered Roger to have another semen analysis for Tuesday and for me to call back on my next day one. I think it will be good to have some time to know what to do next. We would have had to make a decision today about the next steps for drugs, blood tests, ultrasounds, IUI and/or try naturally, etc but we wanted Dr. K's expert opinion on it first. And I would like some time to pray about it. I thought we were going to have to decide today. I am glad we don't have to now. ~Holly

Brain MRI Results July 2011

We went to MD Anderson in Houston for a post-surgery MRI on Monday and on Tuesday we saw Dr. Conrad, my Neuro-Oncologist. He said that everything looks good and they do not see any signs of the tumor. The cavity that was left after the tumor was resected has filled in a bit and it looks like the swelling has reduced significantly. All of this is great news! The doctor was pleased with my progress and we go back in three months for another MRI, which will be in October 2011. At that time we will also visit with a Radiation-Oncologist to see what their thoughts are regarding radiation therapy. All in all, great news as we expected.

This week I also discussed my progress in physical therapy with my therapist, Jacqueline. I am meeting and/or exceeding many of the goals that she set for me three months ago. As a result, we will be moving from three one hour PT sessions a week to just two starting in August. This is important because I will start working full time again in late July and this will allow me to start working at a more regular time three days a week instead of two. I will still need to focus on exercising at home at least thirty minutes a day, which I always don’t want to do, so please pray for me on that one.

Physically, I feel fine and am rarely napping anymore. My energy level is much higher and we recently had the wheelchair that we were renting picked up as we didn’t feel that we needed it any longer. I am no longer using the cane and can walk fairly well on my own. I am still lacking strength in my hamstring and ankle, and don’t seem to have any voluntary movement in my toes or the ability to move my foot side to side, those losses are a bummer, but life will go on because I’ll be able to walk better and better even without those functions.

Thanks for checking in once again. I should get the new MRI images next week and will post pics from it when I get a moment.

-Roger

Back to MD Anderson for follow-up

I have to make this a short one. I’ve been doing very well and am getting stronger every day. I’m still doing physical therapy three days a week from 8-9am. My therapist, Jacqueline, is a master. She is young but very creative and always knows how to challenge me, which I like. She is a Godsend! I started back to work (at home) a few weeks ago… four hours a day at first. This last week I bumped up to six hours per day. I go back to a full time schedule in late July. PT along with work has been challenging for me to stay energized all day long. I have to remember to eat well and get rest when I can. Amazingly, I am not napping during the day at all anymore, which means my endurance level is picking up.

Tomorrow and Tuesday (7/11-12) we head back to MD Anderson in Houston for a follow-up MRI and visit with my Neuro-Oncologist, Dr. Conrad. We pray that tumor has not grown back… will you pray with us? We have decided against doing radiation therapy this time around because my gains in PT are still very significant. Once I plateau, we’ll start with the radiation. I’ll post again later this week with the results of our visit. Thanks everyone! We feel your prayers.

-Roger

So What Happened?

Okay, sorry we didn't blog after our last post. We got distracted and forgot. Well, we did get very busy. Anywho, we went in for the ultrasound on Monday, July 4th after another night of Follistim shot. My three eggs were now 20.8mm, 19.1mm and 21.5mm and the endometrium was 10.7mm. That was a lot of growth from the day before. Dr. K decided we were doing the IUI Tuesday regardless of the estrogen levels but I had to go give some blood samples just so they would know for the future what the levels were. So we drove up to St. David's Main again and gave blood real fast. Then we headed home and packed for a day at Lake Marble Falls with family and new friends. It was great. You can see pictures from the day by clicking on the image above. My pictures of the fireworks are awful so just imagine they were good. Dr. K called me later but I was out on a boat or in the lake and missed his call. He left a voicemail that my estrogen level was 270. So it more than doubled. It wasn't the 400 he was looking for but it was better and we were going through with the IUI the next morning anyway. I did ask him the next day what the estrogen level meant and he said it showed the quality of the eggs themselves. At full maturation they should be about 150 each for best results.

So the IUI happened the next morning about 10:30am. Roger was there with me which was nice. We waited our obligatory 10 minutes after laying down with my bottom elevated. We had time to pray before the procedure then more time after for more prayer. I have to wait to take a pregnancy test at home on July 19th. So until then, thanks for the prayers and keep on praying. Of course it would be nice to not have to do this again, but we will do whatever God wants us to do. Thanks for the love and support, Holly

Side Effects and Timing

Every medication and drug has a long list of side effects. Even common drugs like Tylenol have a list of side effects. So you know fertility drugs are going to have an even longer list and more intense side effects if Tylenol has a long list. I rarely get any side effects from drugs or medications, but these fertility pills and shots were a different story. At first the Femara just caused hot flashes and night sweats. Day two brought on severe back pain only on one side. It was almost unbearable. Tylenol just dulled the pain. Then came pain on the other side of my back, leg and arm pain, headache, more hot flashes, night sweats, joint and muscle pain, sleeplessness, tiredness, and a few others I'll leave off here. And the last night of the pills I had to add a shot of Follistim. I thought it was going to be a doozy of a night of side effects, but it wasn't as bad as I thought it would be. Just really tired. And over the course of the three days of shots it wasn't bad except sudden jarring pain in the abdomen that would go away. So over all not too bad for side effects. Although a few times I was wondering what the heck I was doing to my body. Thank goodness I didn't have any of the "call the doctor right away" rare side effects. Those are actually kind of scary such as numbness of arm or leg, one sided weakness, shortness of breath, dizziness or fainting to name a few.

So the timing of my cycle proved to be interesting also. The ultrasound to see if my eggs were ready for the Ovidrel shot so they can release ended up being on Sunday, July 3rd which meant the IUI might be on Monday, July 4th. If the eggs were ready, we would need to have the frozen sample for the IUI, but we wouldn't know that until Sunday. And we didn't realize all of these timing issues until Friday, July 1st. So I rushed to call the cryobank to find out when and if they were open over the holiday weekend. Not only were they not going to be open on July 4th but they are never open on weekends. And they usually need 24 hours to get a frozen sample ready for pick-up. I was calling them on the day I needed pick up late in the morning. But they made it happen and I picked up the liquid nitrogen canister filled frozen sample on Friday afternoon. It's good until next Friday in the event we don't use it on Monday after all, we would have a few more days depending on my eggs and hormone levels.

Timing can be a tricky deal when it comes to eggs and hormones and insemination. This morning we went for the ultrasound. And not only were we pleasantly surprised but Dr. K was also really excited to see I had quite a few mature eggs. There were two eggs on the right side (the tried and true, always dependable side) which were 16.9mm and 16.3mm. And the left side had a very mature egg at 17.8mm. They like the eggs to be at least 17mm in size. And my uterine lining aka endometrium was 9.1mm thick which was way above where they like it to be. He said it was prime makings for fertilization and implantation. But we had to go have lab tests done to see if my estrogen and progesterone levels were high enough. So we drove up to St. David's Main Hospital north of downtown Austin to give some blood. If the levels were good, the plan was for Roger to give me the Ovidrel shot tonight after midnight to give the eggs a little more time to grow. They grow about 2mm a day. Then we would do the IUI Tuesday morning. Which turned out to be good since it wouldn't alter our 4th of July plans with family.

But Dr. K just called us and told us my estrogen levels were really low. They would like them to be near 400 or higher since there are three mature eggs about 150 each. But it was at 125. The progesterone was good. So the new plan now is to do one more shot of Follistim tonight then have another ultrasound and blood tests tomorrow morning at 10:15am. If the estrogen is higher we'll do the IUI Wednesday morning. If it's really high, there's a better chance for all three eggs. If it's just slightly higher that means there's only a chance for one egg. But we'll do the IUI anyway and see if fertilization and implantation occurs. If it doesn't happen this cycle then we'll know a little more information for next time. And my next cycle should be around the week when the chemo drugs will be out of Roger's system.

Tomorrow's ultrasound and blood tests will most likely affect all our plans for Independence Day, but we were prepared for them to get messed up anyway. And it would be worth it if we got pregnant. So any prayers for test results and timing would be awesome. Thanks so much! ~ Holly

Conception Update

No, not pregnant yet. We have been asked a lot lately what is going on in this department and we know it's because we haven't blogged about it (or anything else for that matter) in a long time. So here's a quick update.

Recap: Roger ended the clinical trial on January 25, 2011. The chemotherapy drug that causes birth defects will be out of his system on July 25th. After that we are allowed to conceive naturally. In the mean time, last year before he started the clinical trial, his oncologist recommended freezing "some of his boys" as Roger refers to them in the event the chemotherapy affects his fertility, which we did. And we decided to continue trying with assistance. We have used one vial so far so we have eight vials left.

After I had the laparosocpy in early February, I had to wait 30 days to have a cycle then one full cycle before we started the process again of trying to conceive via intrauterine insemination (IUI). That time passed and my second cycle proved to be too short and light to do anything so we skipped that month. The next cycle Dr. K had me take Clomid for cycle days 5-9 then have an ultrasound on day 13. I had a few eggs in each ovary but the largest was only 12mm on the right side. He wanted them to be 17-18mm so we scheduled another ultrasound for day 16. The largest egg follicle had grown to 15mm and we decided to not waste a vial this time as all the conditions were not good. Dr. K said my eggs needed more stimulation and he wanted me to try a hybrid protocol the next cycle which meant fertility pills and shots. So I called on day one which was Friday, June 24th. They scheduled an ultrasound for Saturday morning to make sure there were no cysts from the last treatment. There weren't any cysts so they called in two prescriptions for me. I start Femara today for days 3-7 then give myself a Follistim shot once a day on days 7-9 and on day 10 (July 3rd) I have an ultrasound again plus some blood tests to see if my egg(s) are ready. If they are I will be given a shot of Ovidrel to release the eggs and within 24-36 hours we'll do the IUI. If they aren't ready I will need more days of FSH injections to help them grow.

I do struggle at times with not wanting to do any of this, but obviously I am having issues so it has to be done. I keep praying for God to shut this down if it is not His will for us to become parents this way. So I'll keep going on the journey and asking for Him to give me strength, patience and endurance until I hear from Him otherwise. Roger and I are very much looking forward to July 25th. :) We have decided he should have another analysis to see if the chemo did any permanent fertility damage before we call the cryobank to not renew our frozen contract with them. And I will try to get Roger to post a blog this week about all his amazing improvements in physical therapy.

~Holly

Radiation and... Foot Movement!

Sorry for the long delay between posts… two weeks ago today we went to see my Neuro-Oncologist, Dr. Conrad. He will be following me primarily now that my Neurosurgeon, Dr. Lang, has done his work. Dr. Conrad was very satisfied with the MRI and agreed that Dr. Lang did a spectacular resection. What is next? Dr. Conrad does think that we should hit the resection area with radiation to make sure that any tumor cells that were left behind are killed. Any type of radiation that I have to do will be done every weekday for a period of four to eight weeks. I don’t plan to do it anywhere else but at MD Anderson so I assume I’ll have to go on Disability again. But I have absolutely no leave left and in fact, I’m in the hole about 50 hours. At this rate I’ll never be able to take a vacation since I have to ‘pay’ it all back by working. But we will not do any radiation therapy until after I have plateaued in my Physical Therapy. I am scheduled to return to MD Anderson in July for a follow up MRI and if I have plateaued, or am not having any more improvement in PT, we will meet with a Radiation-Oncologist and talk about our options for Radiation. But if I am still seeing gains we’ll put the radiation off for another three months after that. Pretty standard and very safe… I like how they think.

Speaking of gains in PT! Last Friday night I thought I’d cross my right foot over and rest it on my left knee and see if I could move my right foot just for the heck of it. And guess what?!? It moved!! It wasn’t much, maybe just ½ an inch at the ankle, but darn it, I moved it!! The next night I tied it again and not only did my foot move at the ankle but all my small toes also rose up! This is big people… this is the foot that my surgeon didn’t think would come back. Since then I have been able to move it every day. Yesterday, we were doing E-Stim on the foot and after the E-Stim turned off, I was able to keep my foot in the up position and then release it. So we are definitely seeing some gains and I am very excited. The only problem is that when I have a rigorous day at PT I am completely exhausted. It is more of a mental exhaustion than anything else. I can’t describe how difficult and draining it is to try to move a limb that was paralyzed and now very weak. I look at my foot and just try to think about moving it and sometimes it moves and sometimes it doesn’t. It is so hard to do, very draining; in fact I grit my teeth and my am straining so hard that I forget to breathe. But we’ll get there... slowly but surely.

I am supposed to return to work next week on May 5th, but my therapist doesn’t think I am ready and neither do I. How am I going to get up at 6am, go to therapy at 8am and then start working at about 9:30-10 and finish working at 7pm or so and I still need a nap after therapy now as it is? I just don’t know how I’m going to do it and I don’t think I want to. The short term disability people are going to call to see how I am progressing this week and I’ll let them know my concerns and I also have a follow up appointment next week at MD Anderson to meet with my Physical and Occupational Therapist doctor there so that they can check on my progress. I think we’ll get it all figured out soon enough.

My good buddy, John Rich, is coming to Austin from DC this Thursday for a few days to help get me around and just to catch up. He’s a great guy and I need the decompression laughter that I know will ensue when he arrives. And Holly has been taking pictures and videos of my therapy but we have to work on getting them posted, so keep an eye out for that.

That’s all I have for today. Thanks for reading and please keep on praying for my leg to be healed and for my energy level to stay up so that I can do my exercises at home.

-roger

Home Sweet Home, but back to MDACC Tomorrow

Hello, world! It’s me, Roger... blogging again. First of all, many thanks to my sweetie, Holly, for being so diligent and blogging almost every day while we were at MD Anderson. And for being there every day, by my side no matter what. I love you babe! When we last left you here on the blog we were still in Houston and ready to be discharged on April 5th. Everything went as scheduled and we managed to get discharged early enough to venture out and get some lunch, shop for a pair of jeans for me for dinner and then celebrate our 8th wedding anniversary over a delicious nine course dinner in the evening.

Stitch removal - Click for more

The following day we had our follow up appointment with Dr. Lang, my neurosurgeon. We were relieved that he decided that the stitches could be removed. That meant we did not have to stay overnight again in Houston and have them removed on Thursday. He answered all of the questions that we had for him and he also explained to us that the tumor had been analyzed and it returned as the more aggressive Anaplastic Ependymoma, WHO Grade 3. What does this mean? It was more aggressive this time around and this is the highest grade for an ependymoma. Did they get it all? Looking under the microscope during the surgery, Dr. Lang believes so. But it would be foolish to think that every single cancer cell was removed. As a result, tomorrow we are off to MD Anderson again to once again visit with Dr. Conrad, my Neuro-Oncologist. He is the doctor that we did the clinical trial with and we will receive further guidance from him from this point forward. I have no idea what he is going to recommend so I will not speculate but will fill you in on the details after we meet.

OT/PT Eval - Click for more

Last Friday I had my Occupational and Physical Therapy evaluations at St. David’s Outpatient Rehabilitation Services and started both today. I will have two 30-minute sessions of OT for four weeks and three 60-minute sessions of PT for six weeks if not longer. The sessions are challenging and tiring, especially PT. At this point I am not able to move anything in my right ankle or foot and the muscles in my right leg are very weak, but I do have complete sensation. The down side right now because of this deficiency is that I cannot drive.

PT / E-Stim - Click for more

Today we did what is called electrical stimulation (E-Stim) where pads are placed on specific places on the skin and an electrical charge is passed through to make the muscle contract. It basically feels like getting shocked, but is not dangerous and is controlled. The premise is that while the electricity is being applied and activating a particular muscle I am to also ‘think’ of moving the muscle at the same time. This can create a new pathway in the brain to activate the muscle that is no longer working due to damage in the brain. Five years ago I was not able to move my ankle at all and this technique taught me how to do it again. We are giving it another shot. I know… fascinating, right?

Lastly, I wanted to share the MRIs from the day before the surgery and the day after the surgery.

MRI Pre-Surgery: 23Mar2011 (Click to enlarge)

The final size of the tumor pre-surgery: 3.8cm front to back x 2.3cm side to side x 2.4cm top to bottom.

MRI Post-Surgery: 25Mar2011 (Click to enlarge)

Yep, there’s a big o’ hole in my brain now.

-Roger

Fun Weekend Leading Up To Discharge

We had a great weekend here at MD Anderson. It started Saturday with animal assisted group therapy. A group of volunteers and their dogs from WAGS come to MD Anderson every Saturday for group therapy. Roger had a great time and it was nice to do something different. Saturdays can be pretty quiet. He worked with four dogs: Zeke a black lab, Cowboy a poodle, Sesame a yellow lab and I can't remember the last dog's name but it was another yellow lab mix. He threw a ball for Zeke to fetch. He started out sitting in his wheelchair then stood. He worked on his balance and lower legs. Then he gave Zeke a break while he pet Cowboy the singing poodle. He "walked" Sesame for a while which was good as the PT there that day had him try walking differently with his quad cane. And it turned out to be better for Roger and helped him a lot. Then he relaxed with another yellow lab. The volunteers were really nice and cared a lot about helping the patients. You can see a video of Roger playing fetch with Zeke below and more on YouTube and more pictures on Flickr.



We had lots of visitors this weekend from our Houston friends the McPherson family and our Austin friends the Farnies and Lana Joy & TJ. It was great to see them all and spend time with them. And it really made our weekend go by fast. Which is great because it got us to Monday faster. We are super excited as Roger will be discharged tomorrow sometime. The only appointments he has tomorrow is to practice getting in and out of my vehicle with one of the PT's. Then we'll be discharged at some point and we have a reservation for dinner to celebrate our anniversary at Feast. We are super excited to go there for dinner. We have been wanting to try them out for a while. Then we have appointments on Wednesday with Roger's neurosurgeon before we head back to Austin. We are both eager to get home and sleep! It's been hard for both of us to sleep well and rest here. But the show doesn't end then. We already have appointments on Friday in Austin for an OT and PT assessment so Roger can get started with OT and PT as soon as possible with no breaks plus the exercises they gave us last week to do three times a day. You can watch a video below of Roger walking today without a cane. It won't be long before he's back to "normal". ~ Holly

Busy Week

The time here at MD Anderson Cancer Center has been flying by this week. We have been so busy with PT, OT, group therapy, learning new stretches and exercises, getting paperwork to insurance companies and orders to rehabilitation centers, trying to stay rested, moving to a new room and getting relief from being in the hospital with little outings in a wheelchair around the hospital and outside. Time flies when you are having fun. Roger made it down to the big therapy gym in MD Anderson a couple times this week. He started walking with a cane alone Friday and he's super excited about it. You can watch a video of him walking with a cane for the first time below and click on this link to see more videos of him at MD Anderson.



We went over some home activities with the OT to remind ourselves how to get him in and out of the shower and bathtub, what assistive devices we may or may not need and all those other household things until he's able to do them safely and completely alone. He's doing more and more by himself as rehab suggested to help him get back to normal which will help his rehabilitation. We even got a date in Friday night by attending the Rotary House's T.G.I.F. movie night. It was so nice to get "out" and sit on a couch together beside each other. For two hours it felt like we weren't at a hospital. It was great. We have also been given the opportunity to talk to other patients and their families while we have been here and learn about them and their cancer stories encouraging them and they encouraging us in return. It's amazing to me how many people from all over the country we have talked to who had a surgery somewhere else then came to MD Anderson for their second surgery because their cancer returned in the same place or came back somewhere else. It seems the general consensus has been don't mess around and go to the specialists for whatever it is you are dealing with. And for all of these people that's been MD Anderson.

We both can't believe the weekend is here and Roger only has four more days until he's discharged from the hospital. We are both excited and eager to get back home and get started with outpatient therapy and rehabilitation in Austin. Roger is not only ready to regain all the movement he lost but get more mobility and strength to do things he hasn't been able to do for the past five years like cycling and maybe running again. I'm hoping we can throw some dance lessons in there also. :)

We are looking forward to animal assisted group therapy Saturday and friends visiting this weekend. We have to thank God for an amazing week. We have so much to be thankful for.

~ Holly

Wonderful Wednesday

Wow, what a Wednesday! Roger had a great day of OT, PT and group therapy. And we got some unexpected news.

First, OT was great. He did a lot of balloon and ball bouncing exercises that worked his balance a lot at the same time. He did great and was able to recover well when he got off balance which is more work. And just like the last time he was in in-patient therapy he pushed himself harder than the therapists required. After a short break, we went to group therapy and it was awesome. A therapist who plays the guitar and harp leads music therapy once or twice a week. She explains what music therapy can do and how it helps healing whether you are a patient or not. She explained how singing exercises the lungs and helps keep fluid from building up in the lungs and singing works both sides of your brain at the same time which is rarely done with any other activity. So she passed around some Easter eggs half filled with beans for us all to use as shakers. She sang the Tom T. Hall song, "I Love" then asked each participant to state something they loved and she wrote them all down and sang our version of the song. It was great. An older gentleman in the group who was a patient said he loved his wife and his life. He told us during introductions that he was married for 55 years and had one great-great-great grandchild. And when she sang that part of the song I began to tear up but then I looked over at him and he was crying. I lost it. The tears wouldn't stop. Everyone in there were cancer patients and has been through so much. They were all uplifting and encouraging. It was truly unbelievable. Roger and I were both so glad we were there to meet them all and experience it. We will be making it to all the group therapy sessions. She played one piece on the harp which was beautiful then a bunch of other songs we requested from a long list. We all sang and shook our shakers. It was great.

We had a delicious lunch and rested until Roger's afternoon PT session. Before the physical therapist came to get Roger, a speech pathologist showed up to evaluate him. Of course she decided he didn't need any speech therapy which doesn't just include therapy on speech, but memory, reasoning, cognition, etc. We had a great session of PT with Myleen. She worked Roger hard, but he tried to work harder. She really knows her stuff. Roger likes working with her a lot as he knows she is going to get the muscles that aren't working firing and he's going to see good results with her. Dr. Shin one of the rehabilitation doctors came to see Roger first thing in the morning for rounds. He always asks if we have any questions to which I turn to the questions in my notepad and go down the list from the previous day. He and Roger discussed why his right leg has spasms stating Roger needs to stretch a lot more as the muscles are tight and are over exaggerating. He came back in the afternoon to let us know they are planning to discharge Roger next Tuesday, April 5th which is great! We weren't expecting that! Roger has follow-up appointments on Wednesday, April 6th with his neurosurgeon so we will stay the night here in the Rotary House where I'm staying and go home after our appointments the next day. We asked him a bunch of questions about returning home, out-patient therapy and other needs once we return home.

The other crazy thing about Roger being discharged on April 5th is that happens to be our eighth wedding anniversary. The reason I think it is crazy is we have not missed an anniversary yet. Through deployment separation, first brain surgery hospitalization and military disability/retirement processes we have not missed celebrating an anniversary together. On April 5, 2006 we had delicious Italian take out at home by candle light as Roger came home just the day before from living in National Rehabilitation Hospital for 3 weeks after his one week stay in Bethesda Naval Hospital from his first brain surgery. Praise God! I had begun to think about what we could do next Tuesday for our anniversary in the hospital. From trying to have a semi-private dinner together in the hospital to some way to get out of the hospital for a couple hours, I was starting to work it out, but now I don't have to. This is truly amazing.

We went for a roll in a wheel chair around the inside and front of the hospital so Roger could get out of his room a little. He really enjoyed the fresh air and the sun. Roger also got his own ankle-foot orthosis right before dinner arrived. So it turned out to be a wonderful Wednesday. ~ Holly

More PT Drill Sergeant

Roger is bound and determined to get out of here as soon as he can. Since he has decided to stay here at MD Anderson Cancer Center (MDACC) for a week and a half of therapy and rehab, he will get three hours a day of a combination of occupational therapy (OT), physical therapy (PT) and group therapy. He only received a little bit of PT by the OT on Monday afternoon, but this morning he started early with OT. He's having breakfast then moving on to PT. Maybe he'll get in some group therapy this afternoon or more PT. Keith the OT that came to see him yesterday afternoon told him to stay out of bed as much as possible and do everything himself that he can and both will help him to get better sooner. Of course it's more work to sit up than lay down in a bed and he will be more tired but he wants to be tired and walking on his own without a walker so he can get home sooner. I have posted a few videos of Roger on YouTube so check out the one below and click on the link to see more.



I slept in late today as a result of hitting off on my alarm instead of snooze and me forgetting to turn on my back-up alarm (the hotel room alarm). Obviously I needed the sleep and the time to catch up on uploading pictures & video, blogging, entering receipts and keeping up with our finances with Quicken and my own personal hygiene as I have been staying in Roger's room all day and late every night helping him. But with him doing in-patient rehab and therapy we will have more of a schedule and I'll be able to get more done knowing what time everything is and not sitting around doing nothing while waiting for someone to show up. So today is catch up day for me. Yeah! ~Holly

Monday, Monday

So far it's been a relatively quiet Monday morning. PT & OT have not showed up yet, but they should. There are lots of patients in the pod Roger is in and they are making their way around doing PT/OT with other patients. Roger's neurosurgeon Dr. Lang & his nurse Cheryl Martin came in this morning a few minutes after the rehabilitation doctor came in to give his recommendation from the PT/OT/rehab evaluation. He is recommending in-patient rehab for a week and a half here at MD Anderson. Dr. Lang recommended the same so Roger could start getting therapy and rehab right away and be here in the event he needs any medical assistance. And Roger agrees with them. If he wanted to go home, it would take days to get all the paperwork transferred to a facility in Austin and for Tricare to find a rehab facility that takes our insurance. Roger is looking forward to the rehab here at MD Anderson just not being here that long but knows it is necessary and for the best. And you never know, he may go home sooner if he improves faster. Dr. Lang also stated that the MRI looks good and perfectly clean. The pathology results will be available most likely by Thursday at the conference with other doctors including Roger's oncologist Dr. Conrad to review the results of the pathology and MRI. So we'll here more about that after Thursday. The IV in Roger's hand was removed this morning and he is super happy about that. All his meds are by mouth now which are just anti-seizure, steroid & pain/nausea medication as needed. I'll probably post again this evening after he does some PT/OT today. ~Holly

Boring Sunday

Well, today was pretty much boring the whole day except for when our friends Scott & Lydia and their children came to visit us. No PT, no OT, no rehab, nothing. But it was good that it was so boring as we were both able to get lots of rest. Roger was really tired this morning and took a nap mid day. I did not sleep well Saturday night so I took a nap in the late afternoon. So we're both trying to go to sleep relatively earlier than we have been so we are rested up for all MDACC has planned for us tomorrow. We know Monday is going to be a busy day.

And thanks for the prayers, Roger has had two BM's since yesterday. No suppository for him. Yeah! And maybe tomorrow he'll be able to get the IV taken out of his hand if his neurosurgeon Dr. Lang agrees. He's been off the IV saline and is now only receiving a steroid for swelling and 1 mg of dilaudid when needed for pain by IV. Both are available in non-IV form. And he's only had pain medication once each day since he moved to a regular room. I don't think he asked for any pain medication today. And he actually did some of the exercises he was given for his right leg today. We both can't wait to see what OT, PT & rehab have in store for tomorrow.

Good night.
~ Holly

Quiet Saturday

Well, Saturday here at MD Anderson is pretty quiet. Here's how the day has gone so far.

His dressing was taken off and it didn't even need to be cleaned it was so neat still. OT showed up at 8:00 am. They had Roger get out of bed and into a chair for breakfast. They told him he has to have all his meals in the chair and needs to be in the chair for 4-6 hours a day. PT came and had him walk with a walker 30 feet to the corner of the unit and back which proved easier as he came back. They also saw movement in his toes! OT asked Roger when his wife would be there because they wanted to observe Roger taking a shower. A little bit of notice would be good people! So they missed observing his shower, but they didn't need me anyway. He was able to take a shower all by himself although he did need a little bit of assistance getting in and out of the bathroom and sitting down on the shower bench with the walker and drying off only a little bit. But other than that he did it all by himself. He also shaved completely on his own. He tried to have a BM but it was a no-go. He has been given stool softener with every meal and milk of magnesia this morning. If he's not able to go soon, he'll have to get a suppository. Fun! Oh and all your prayers worked on the urination problem yesterday. He's definitely good to go with that now. So thanks! He was so happy to not have to have the foley put back in. His IV was also removed before he took a shower and it looks like he won't have to have it any longer. He's going to pill form for all his anti-seizure and pain medications. And speaking of pain medications, he hasn't had any since 3:35am this morning when they came in to take his vitals and some blood samples. He had a few visitors today, his sister Cindy, my brother Harvey Jr and sister-in-law Brandy and our neighbors Eric and Brea.

He's doing really great. We are blown away with how well he's doing compared to how we thought he might be after the surgery. We were ready for permanent paralysis and maybe speech loss. God is good people!

So we are expecting Sunday to be even more quiet which will be good for Roger to get more rest. We don't think OT or PT will show up on Sunday. While Roger takes a little nap, I'm blogging, uploading pics (click on the image above to go to Flickr for more pics from this adventure) and doing a load of laundry before I head back to Roger's room. We only brought enough clothes for a week (We've been here since last Monday.) and it looks like we will be here a little bit longer. I'm staying at the Rotary House which is a hotel for the family and patients of MD Anderson and they have facilities and activities for long term lodging. It's so nice to just take an elevator to a skybridge that connects directly to the hospital. Worth the extra money.

Until the next update...

~ Holly

Video Post Surgery

Here's a video I took of Roger in ICU shortly after he got there from surgery. Enjoy!

Day After Surgery

Roger's first day after surgery proved to be an extremely busy day. I just got back to my room about 12:15am. It started out better than his first night. He moved from a liquid diet to a soft diet. For breakfast he had a hardboiled egg, bacon (of course!), orange slices, honeynut cheerioes with 2% milk and apple juice. Dr. Lang came to visit him and ordered his foley catheter removed and his magnesium and potassium IV's removed. He also said he could move out of ICU when the next bed became available. We thought that would be a while.

Physical Therapy came to evaluate him. A PT came and helped him get out of bed and sit in a chair. They did some exercises on his legs to see if he needs to go to the rehab floor for a bit or just stay on the regular floor. His left side was good, but his right side was slow. The second set of exercises they did on the right leg went faster and better than the first. He was still not able to move his right foot or ankle. As a result of this he can not walk without assistance. If he does go down to PT they'll probably do some electrical stimulation for that. It worked on his right lower leg after his first craniotomy caused him paralysis. Shortly after the PT left a Rehabilitation Services person came to evaluate his self care and home care abilities and if he would need therapy in those areas. He told us they would be evaluating him again and by early next week as he rested and more movement & abilities returned they would know what rehab and therapy he would need. He was super tired after all this.

If you know Roger, you know he had a strategy for choosing his lunch options so he could have better options for dinner. He had an MRI scheduled for 9:00pm and he wanted to eat before his MRI so he wanted to save the big meal for dinner. For lunch he had cream of mushroom soup, a philly cheesesteak sandwich, green peas and the root beer he didn't drink the night before. Well, they moved him to a room on the regular floor and the rest of the day was spent dealing with the move, getting situated then being sent off for the MRI between 6:00-6:30pm earlier than planned. He was taken to the 3rd floor in-patient MRI department and as soon as they tried to put his head in the forms for the MRI it hurt his incision again. So his new nurse on the regular floor who he had not even met yet had to come down from the 8th floor to give him some dilaudid. He didn't return from the MRI until 8:50pm which caused a problem with eating dinner as dining services stops taking orders at 9:45pm and closes at 10:00pm. So as soon as he got back in the room, I had to get him to decide what he wanted to eat (they are given a menu) and call the order in asap. They always say the order will arrive in the room in less than 45 minutes so we were pushing it. As we waited for dinner to arrive, Roger's nurse was literally running around trying to get everything that every patient needed done done. It was crazy busy in there. As she was trying to get one anti-seizure med via IV, stool softener & another anti-seizure med in pill form to Roger she noticed his IV hand was swollen. She knew his IV had gone bad and needed to not only switch it to his other hand which had another IV in it but she needed to remove the bad one completely and she noticed he hadn't gone to the bathroom for a while.

So she unhooked him from the bad IV so it wouldn't keep going into his skin but then she got called to another patient. When she came back she did a bladder ultrasound on him real quick and it showed his bladder was filled to 800 units and told us anything over 250 should have the foley put back in. She got called to another patient and Roger tried to urinate while she was gone. And he tried really hard because he did not want the foley back in. He had been trying for a while when she returned and he convinced her to let him try standing up. So she held his right, weak side while I held his left side so he could try standing up. It took forever and he was able to slowly get rid of 400 units. We talked him into taking a break and trying again later as she and I both were getting exhausted. At this time it was 10:00pm and his dinner had not shown up yet. She told me to try and call dining services but they may not answer. So I called and got a recording. They were closed. I opened the door to his room and looked around to see if maybe they brought it and just set it outside the door. Nothing. Then I saw a tuxedo clad dining services person coming down the hall. What a relief. Roger got his fancy dinner of Greek salad with Greek vinaigrette, stuffed shrimp with lobster sauce, wheat dinner roll, Sprite and angel food cake with fresh strawberries. He said it was delicious.

And he was able to urinate again and get rid of the remaining 400 units. It was a little easier this time and we didn't have to hold him up. His nurse was also finally able to get rid of the old bad IV for good. We got him all situated again and ready for bed. Now I'm off to bed finally myself. So glad too, I'm super tired.

~Holly

First ICU Night

Roger's first night in the ICU did not go well. First he had a bad headache and the ICU staff tried hydrocodone, morphine and dilaudid which did not help. The staff had to call the Neurosurgeon on call and he approved a higher dose of dilaudid which finally worked. It turned out it wasn't a headache but pain from his incision. His incision was being pushed on by the bed so they had to try a bunch of different solutions to get his head off the bed but comfortable. He can not lay flat so he is kind of sitting up a little at 30-40 degree angle. Rolled up towels finally worked.

Once he was finally able to be pain free and get comfortable he was able to fall asleep but as soon as he did the pulse machine would go off because his heart rate would get too low. So the ICU staff finally cut that off. Then people were talking outside his room and that woke him up. The staff tried to shut his ICU room door to discover it was off the rails. They finally got that fixed and when he was finally able to go to sleep a dining services person showed up to take his breakfast order. So he only slept really from 4:00-6:00am. He called my room the first time at 6:15am and left a message to bring his ear plugs when we come to visit. He said he couldn't remember the other stuff he needed yet. He called again at 7:55am and I got to talk to him that time and he gave me a list of things to bring him and that he didn't want any visitors when visiting hours started today so he could sleep longer. So we'll be going an hour later than we planned this morning. Thank goodness we're just across the street.

Last Update (3:04pm)

Dr. Lang met us in the surgical waiting area. Here's a recap of what he told us:

-They are sure they were able to get all of the tumor.
-Turns out the blood vessel going over the tumor was only going to the tumor so they took it. The tumor was very bloody and had cysts in it.
-The frozen section of the tumor showed it was ependymoma so it was not necrosis or anything else. Further pathology will be done to tell us the grade. It could still be grade 2 but might have increased to grade 3.
-During the surgery he couldn't move his right foot but could move his right leg. His right arm is fine. Later in the surgery he couldn't move his right leg, ankle or foot. Dr. Lang did stimulate the part of the brain that controls motor function and his leg shot right up. So it's there but may take a while to come back if it comes back at all. He may have to wear a brace. (He has since picked up his right leg many times in ICU & had some reflex in his right foot but no movement yet.)
-His dura was completely stuck to his brain right over the motor cortex and it took a while to get it separated. This might have had something to do with his movement problems on the right side.
-They did remove his old screws from the first craniotomy and used part of the old incision but had to extend it and make the flap larger so he's going to have a more interesting scar than previously.

He was moved to ICU after surgery and will remain overnight. Dr. Lang will check with Roger tomorrow morning and as long as there are not any complications he will move to a regular room Friday.

He is on a liquid diet tonight so he ordered cran-grape juice, rootbeer, cherry popiscle, rainbow jello and chicken broth. It was delivered by a tuxedo clad server. He has been given those respiratory exercises to do 10-15 blows every hour of daylight.

Thank you all for your prayers, concern, messages, comments, well wishes and love. We had peace all day. The only time I got anxious was right before the first update and all the other families in the waiting area were getting their updates and we heard nothing. I went to the rest room and felt as if I could start crying. I thought to myself, "Okay satan, you are not going to do this to me and take away my peace & joy." When I got back to the area where my family was, I leaned my head on my mom's shoulder while she was reading and asked God to give me peace and as I prayed I started to get teary eyed. But as soon as I lifted my head up, I felt peace all over. I know it was God surrounding me with his love.

We will be updating the blog as often as we can and uploading a video as soon as I get it uploaded. Maybe even have Roger doing an update soon. He said he remembers a lot during the surgery and it would be great for him to recount what he remembers especially for people who might be preparing for awake surgery. I didn't sleep much last night but I'm pretty sure I will sleep very well tonight.

Third Update (2:12pm)

Just got the third update: They are done with the resection and are closing him up. Have the dura, etc done. They are preparing the bone flap then only have the scalp left to staple closed which will take another 45 minutes to an hour. Then we'll get an update from the neurosurgeon.

Big Sigh!

Second Update (12:15pm)

Just got the second update: He's awake. (I thought, yeah I know, I just talked to him on the phone.) They are working under the microscope. Vital signs are good and everything is going well. More in two hours!

Phone Conversation During Surgery

Oh Em Gee!! I just talked to Roger on the phone while he was in surgery! I'll try to recap the whole conversation.

The volunteer at the surgery waiting desk came and told me they wanted me on the phone. I walked to the desk and she handed me the phone. I said, "Hello?" and heard the anesthesiologist Dr. Ferson say, "Roger". Then Roger started talking to me.

Rog: Hi baby. I'm talking to you during the surgery.
Me: I know. Isn't this weird?! How are you?
Rog: I'm a little groggy, but fine. My throat hurts a little. They are working on my brain right now.
Me: Really? What have they had you do?
Rog: They had me move some of my body parts and talk. The light just turned off. I think they are using the microscope.
Me: Are you in a halo?
Rog: Yes and kind of in a little cave.
Me: Your head isn't going to come out? You can't move too much and come out?
Rog: No, I'm in good. But I have to go now.
Me: Okay.
Rog: I love you.
Me: I love you too baby. Bye.
Rog: Bye.

So freaking weird cool!! This means they are in his brain working on getting the tumor out right now. Next update around noon.

First Update (10:20am)

We just received the first update. The surgery started at 8:28am and they are still working on the approach to the tumor. The next update will be around noon. Thank you all for the prayers. We really feel them.

Just to let anyone know who hasn't read it previously, there are three phases to the surgery. Phase one was opening the skull and exposing the brain. This phase Roger is under anesthesia. The second phase starts when the brain is exposed and they are ready to start the "real" surgery. They will eventually bring Roger out from anesthesia for part of this phase to have him respond to tasks and complete the tasks such as talking, moving body parts, etc. This is the phase where if they want to see how he sends and receives information they may have him call me during the surgery. Pretty wild. The last phase will be putting him back under anesthesia and closing him up. Each of these phases will take around 2 hours. So the surgery should be around 6-7 hours total.

Surgery Beginning

Good morning everyone. We checked into surgery at 5:00am and took turns sitting with Roger back in the holding area. They gave me instructions and reviewed the surgery again to us. We did learn they are not doing Roger's surgery in the BrainSUITE after all. Dr. Lang is not happy with the way a microscope or something is drifting nor the position Roger would be in so he moved the surgery to a regular craniotomy operating room. Which means no MRI during the surgery to see if they got it all. They will still use the MRI data during the surgery, but they won't take an MRI during the surgery. This could mean they may not be able to get it all and will not know until they do an MRI after the surgery. Roger was not estatic about this and kind of made him a little anxious. Dr. Ferson came in to talk to Roger about the anesthesia. They decided because of his recent pancreatitis to not use Propefol but something else. I couldn't understand the name as Dr. Ferson is Polish and has an accent. But Roger is happy with all their decisions and confident in these changes. His assistant gave Roger an IV and some calming medicine. Right at 7:10am they gave him the "tequila" as she called it and wheeled him away. We "should" receive our next update about 10:00am.

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Thank you to everyone for all your prayers, thoughts, messages, concerns, well wishes. We have had a lot of peace this week and we know it is because you have all been lifting us up in prayer and God is with us through everything. I have to thank our amazing friend and neighbor Paul Emerson for something he said to us on Sunday evening that has been resonating with us ever since. Our God does not change and he is bigger than cancer. Hallelujah!

~ Holly

Down to the wire!

Friends, we are down to the wire. All of our appointments went fine today. Tomorrow morning we have to report for surgery at 5:15am CT and we figure the surgery will begin roughly around 7:30am CT. The surgery should last about six hours total. The first two hours will be getting me asleep and cut open; the next two hours they will wake me up and then remove the tumor; the last two hours they'll put me back to sleep, close me up and roll me to the ICU. Simple, right? I mean, it's not brain surgery... wait, it is. (Sorry, had to use that one again five years later.)

Click the pic to see the
fiducials being placed

We talked to the surgeon again this morning and the major risks are still the same... small possible loss of speech and possible further paralysis of my right leg, ankle and foot. I really think that we've covered this in prayer though and it's in God's hands now. The nurse also put fiducials on my head that the surgeons will use during the surgery. It was fun walking around with what looked like lifesavers on my head. We even went out in public and enjoyed some fresh air as it was the last I was going to get in a few days.

I feel good about everything. I can't wait to get to sleep and wake up at 4am to get on with this. I'm going to shave close tonight so that it will last a few days and maybe wash my face. I can't bathe because it might cause too much steam and the fiducials could come off. Holly's mom and sister came out and my parents are here now also. We also got to spend time with our good friends Eric and Brea that live in our neighborhood. Eric lost one of his fingers to cancer just a few months ago. It was nice to be in such good company all day long and to read all the wonderful messages on Facebook and Twitter to us from our friends and even their friends. Humbling.

We are off to bed. Holly will be updating the blog which will update to Twitter and Facebook in near real time. The blog will be most current and timely at www.mommaerts.org. I hope to be blogging again real soon.

Thanks to everyone and I love you all so much.

Love,
-Roger