Alright folks... I had my MRI last week and Holly and I saw the doc at Texas Oncology today.
Decision: We decided that at this time it will be best to transfer care back to MD Anderson Cancer Center in Houston to Dr. Lang to discuss what to do next. I trust his opinion. He is one of the top neurosurgeons in the country. They are going to call me to schedule an appointment. We’ll go again presumably in six weeks and have another scan and a talk. I am guessing that we’ll be having another surgery to take it out in early 2017. This will give the tumor time to grow a bit larger so that it is easier to target. Maybe we’ll follow-up with radiation this time around.
How do I feel? Well, I don’t feel great, I mean.. There’s an unknown foreign body growing in my brain.. again. Sheesh.. I was a bit shaky talking to the doc (or I was cold) and talking about this crap is never easy. But it IS easier the third time around (really.) Thinking of surgery I asked the doctor what was around the tumor site this time as it is deeper than before… he said it is probably my foot motor center in the brain. I told him I already can’t move it that much so whatevs. Then he says, probably sensation. So a numb limb (yay!) But, we really don’t know at this point.
We are also starting to think about stupid stuff like... updating wills, getting stuff done that we have not yet, spending time together (dates!!) We also looked at the last surgery as a reference and I was in the hospital for 10 days and in the Houston area for almost two weeks. Last time it was easy… no kid. This time around we have Abi so we have to figure out what to do with her in school two days a week. And I’m not sure her being around post surgery in the hospital is a great idea. I think we have expenses covered for the most part as we have Tricare and they cover quite a bit, it's a blessing. A pain sometimes, but a blessing nonetheless.
Where do we go from here? We wait. We plan. We enjoy life. As I said before.. We’ll get through this. Thank you to everyone for your concern, thoughts, kind words and prayers. This is the easy part, the tricky part is yet to come. Thanks for riding along with us on our journey… (again.)
#cancer #braintumor #ependymoma
I cannot believe we have not posted in three years! I'll get down to it...
Tomorrow Dr. Groves is going to speak with Dr. Lang back at MD Anderson Brain and Spine, who was my neurosurgeon back in 2011, they will discuss the scans and come up with a plan. Right now there are three obvious options: surgery (again), radiation (last done in 2006) and the experimental Delta 24 (DNX2401) trial that Dr. Conrad and Dr. Lang worked together on. In addition, we will be doing another MRI in six weeks to see if we can chart the growth rate of the tumor.
We don't know much more than that at this point. When I heard the news I felt like I got the wind knocked out of me for a bit, but had to realize that we have this and this is the smallest we have ever found it which is a good thing. On the long drive home filled with rain and traffic, I notified Holly, family, and my closest friends in my battle to let them know. Now I am letting you know because we have never kept this a secret. We hope that what we have gone through over the past ten years has helped somebody out there going through something similar. Am I scared? Yes. Anxious, sick, worried, tired? All yes.
I don't want to go through this again. I hate it. I hate it for anyone that has gone through this. The uncertainty and questions. I don't want to go through it again and I don't want Holly to either. But now there's Abigail. I never wanted her to have to experience Daddy going through this like he did the past two times, but she will.
I know what you're thinking.. how can you help? Pray. Pray for a miracle. Pray for healing. Pray that the dot in the MRI was an anomaly and won't be there in six weeks. Don't feel sorry for us, fight with us. Encourage us. Be there if we need it. That's what we'll need in the coming weeks.
We'll get through this. I'll survive. I may lose more function after another surgery, but at least I'll have my life and family.
#cancer #braintumor #ependymoma
So… ah… yeah, we are a little behind in blogging. An entire year behind. Our last blog post was also the day our daughter, Abigail Juliette, was born. Thinking about our last blog post being Roger’s story of Abigail’s birth, I realized I have not written my story down. I am worried if I do not write it down I will forget details or possibly forget it completely. And when Abi asks me in the future how she was born I will not be able to tell her. So I am going to attempt, one year later, to tell my story of her birth.
On Wednesday, May 16, 2012, I woke up around 6:00 am and as usual the first thing I did was go to the restroom and there was blood on the toilet paper. Periodically during my stay at the hospital when I would get up to go to the restroom there would be spots of blood when I wiped, sometimes a little more, but it never continued to bleed. So I figured this time was the same. Since I really wanted to get to full term (36 weeks) and my scheduled caesarean section, I really hoped it was nothing. As I sat back in the hospital bed I felt blood flow. I did not even try to look myself as I couldn't see past my belly for some time now. I remember thinking, “It will probably stop.” I called the nurse as I had to do every time I saw blood even if it was just spots. I texted Roger to let him know just in case. She checked my pad and said there was some but we would wait a bit to see if it stopped. Almost immediately I felt flow again. So I called her back. She said she was calling my OB. It seemed like every time I thought about it I would feel blood flow again. The feeling of blood under me drove me a bit crazy. I did not like the feeling of sitting in the wetness especially blood. Roger and I were texting back and forth about whether he should start heading to the hospital. I think my uncertainty was because I really wanted to make it to full term. It seemed like not very much time went by and blood flowed so many times I finally remember sighing deeply and thinking, “Okay, this is probably it.” My OB arrived and without hesitating much after she asked me what happened she said it was time. I remember thinking, “Wait, don’t you want to wait a little bit to see if stops?”, but knew in my gut it was time. I texted my sister I was going to have the c-section. The nurses began to prep me for the OR. Roger was on his way. We did not know if he would make it in time, but someone assured me they would wait for him. The OR team arrived and put an IV in my arm just in case they needed it even though I had one in the other arm already. I remember discussing with them if they really needed to give me two. I really hate IVs especially after 26 days in the hospital and having to get a new one every few days. They took me to the OR in the hospital bed and moved me over to the surgical table. They told me to sit on the table facing the wall. One OR nurse stood in front of me to help me while they inserted the spinal block. I thought it was weird to sit up while blood was flowing out of me still. But I did what they said of course. I was very nervous about the spinal block. Spinal blocks and epidurals freak me completely out. Just the thought of where they put them scares me. I think I told the anesthesiologist I was nervous about it. He talked me through it as he did it. I pretty much immediately started feeling numbness and when they told me to lay back I thought, “How can I if I am numb below my waist.” But of course I was able to lay back.
A lot of stuff started happening and I couldn’t really see much. Dr. Miller and Dr. April came and talked to me by my head. I felt good they were there and confident about them taking care of me and Abigail. There was so much going on but time felt like it was flying. I started to feel very nervous, almost sick to my stomach. I remember thinking I just wanted it to be over. Hurry up and get this over with. I had previously told Dr. Miller during check-ups that I wanted to know everything that was going on during the c-section. But I felt so sick and didn’t want to know anything. I just wanted it to be over. So I got the nerve to speak up and said, “Dr. Miller?” And she said, “Yes?” To which I responded, “I know I said before I wanted to know everything that was happening, but I changed my mind.” Everyone in the OR laughed, including me. I did not know Dr. Miller had begun trying to find Abigail’s heart beat as the other prep was happening. All of a sudden I hear her say something about the heart beat and then I hear, “This is happening now.” All of a sudden a drape was put up right at my face it seemed. And I swear in less than one minute I heard a baby cry. I remember being surprised by it then I just started crying. I felt like I was shaking the whole table with my crying but I am sure I just felt that way. I know stuff was still going on below and I could tell the baby was taken to the side but I could not see anything. I don’t remember if they told me anything about Abigail but I think they did ask me her name. Then a NICU nurse, Priscilla, appeared beside my head on the right side with Abigail all swaddled up in those striped blankets you always see babies in at hospitals. She said something to me like, “Here’s your beautiful daughter. Give her a kiss.” Priscilla’s angelic face and excitement about Abigail made me feel so good. Then she shoved Abigail’s face at my face and I kissed her. She told me they were taking her straight to the NICU. I asked her if my husband Roger was going with them and she confirmed that he was right outside the door waiting and he would be with Abigail. I am sure with everything that just happened, the emergency c-section, the abrupt birth, and the separation of myself and my baby, caused me to feel very overwhelmed. I started trying to breathe deeply and slowly to get my nerves in check and try to calm myself. I guess it was fairly loud because Dr. Miller asked me from the other side of the drape if I was okay. I told her, "I think I am just nervous." She asked me if I wanted anything to help and I told her I did not know. She probably signaled the anesthesiologist because he appeared next to my head on the right side and began talking to me in such a calm way. It really helped me be able to make a decision and I let him go ahead and give me something.
That’s all I remember. I woke up in recovery in what I thought was thirty minutes after the c-section. Boy was I wrong. It turns out it was many hours after Abigail was taken from the OR. I did not know this until the next day, but my placenta would not detach from the uterus and I had lost a lot of blood already. A balloon was inserted after the placenta was finally removed to help stop the bleeding. It finally stopped enough for them to be satisfied to take me to recovery then I was sent back to Labor & Delivery to be observed until the bleeding stopped completely and I was safe. If the bleeding did not stop with the balloon they would have removed my uterus to stop it. I was in and out of consciousness until they moved me to L&D. I remember seeing and talking to our neighbor Paul who was dropping of a gift but they thought he was a delivery guy and let him come into recovery. I asked him where Roger was and I guess he went to find him. I still did not know at this time that hours had passed since the c-section. I went back to the same room in L&D I was in each time I had a big bleed and was taken to the hospital. It was right across from the OR just in case I needed to go back in. Nurses were checking on me frequently. Between the bleeding of my uterus, the catheter, and the saline for the IV, I was surrounded by bags that nurses were checking often. They would lift up a bag and I could see blood or urine and wondered what was going on. They were always telling me stuff or asking me questions but I couldn’t understand much of what they were telling me. It was almost like I didn’t care. I knew I would be okay eventually and Abigail was in good hands. I had complete confidence everything was going to be okay. I could feel the tube from the balloon coming out of me and it always felt like it was coming out. I woke up once and looked up and saw bags of blood on the IV pole. That was quite a shock to see. I received a lot of pain medication that first day and night. I was so out of it. The next morning was more of the same in terms of nurses in and out checking bags of fluids. I received two more bags of blood and my OB explained my blood was still not how it should be from losing so much after the c-section. I do remember thinking, "This sucks. C-sections suck. I wouldn't wish this on my enemy." Maybe mine was worse because of the emergency and my placenta issues, but I hated the experience. By the end of the day, the doctors were satisfied with my blood and my uterus to move me to postpartum. Before moving me over, the nurse moving me noticed the time and took us to the NICU first so I could finally see Abigail. I only had a few minutes before visiting time
I remember being glad to finally get out of the hospital and that I was healthy enough to go home, but wondered how I was going to get to the hospital to see Abigail since I couldn’t drive for two weeks. Plus I was pumping every three hours and wanted to get my breast milk to the NICU for her. My dear friend Lana Joy drove me as often as I wanted and even came to the NICU and helped bottle feed Abi after I breastfed her. I started driving a week and a half later and went to the NICU every day myself and every other night with Roger. After a few restarts of the countdown to take Abigail home due to breathing and heart issues, we finally brought her home eighteen days after her birth.
It has been an amazing year. And it has gone by so fast. Everyone says it goes by fast. I realized a few weeks ago why it goes by so fast. The first six months were truly a complete blur of just trying to survive. All that was important during that time was getting sleep, eating and taking care of Abi 24-7. The first year goes by so fast because you really do not remember the first six months clearly. I do feel like things started getting a lot easier at six months. Yes, it got easier up to six months, but it was slow. Like by minutes easier. As Abigail could stay awake longer and longer between naps, it also got a lot more fun. She really is a lot of fun. I feel like we are always laughing. And we play a lot. Sometimes I think for a second I should be doing something productive like laundry or mopping, but since I am naturally lazy, I easily convince myself that stuff is not important and can wait. I am playing with my baby. I do feel so extremely blessed I get to stay home with her full time and Roger works from home. We all get to play a lot.
Abigail Juliette Mommaerts
Born May 16, 2012 at 8:55am
4lbs 10oz 18inches
Quick summary of yesterday’s events… Holly had bleeding when she got up at about 6am. The bleeding did not seem to be stopping. Holly texted me at home and we tried make a decision on if I should come up or not. I went ahead and got things together and about 7:45am they told me to come up. I hopped in the truck and drove in rush hour traffic (as quickly as I could) and got there at 8:35am. I came to the room where Holly was taken from and the nurses were there waiting for me to get me dressed in scrubs to join Holly in the OR. I made it to the OR at about 8:45am and was asked to take a seat and wait for them to call me in. There was another gentleman there whose wife was having a scheduled C-Section and we talked for a bit and he took that picture of me. He got called back and I continued to wait. As I was sitting there I heard about ten short very loud cries and I was confused. I knew it could not be the guy that just left, so was it mine? 9am came around and a nurse came to tell me that the baby was out because they had to move quicker than planned. I learned later that they were almost ready for me to come in but when they were looking for Abi’s heartbeat they could not find it. They decided right then to get the baby out as soon as possible. They cut Holly open and got her out immediately. Turns out she was just hiding from the monitor and was fine all the time. They let me look thru the OR window and I saw Abi being tended to at the left of the room, and then I looked right and saw Holly on the table with a drape right below her neck, she was smiling and talking to the Anesthesiologist. Then I looked at her lower body and I saw a large red bloody ball on her belly. I asked later and I was right in assuming it was her uterus.
Abi was delivered with no problem other than she was delivered prematurely at 34.5 weeks. She came out of the OR and I joined her as she was moved to the NICU. Back in the OR, the doctors had a hard time detaching the placenta from the uterus. It was growing into the uterus and when it was removed there was excessive bleeding inside the uterus. So much so, that Holly received a transfusion of two units of red blood cells. A balloon was placed inside the uterus and filled with saline fluid. That along with the uterus contracting, as it usually does after delivery, helped to stop the bleeding.
Holly’s parents and my parents came to the hospital to see Abigail and to see Holly for a short while. It was short for them but long for me. They are allowed into the NICU with only the parents and one at a time. Each time you enter the NICU you must scrub-in up to your elbows for three minutes and cannot wear any jewelry on your wrists or fingers. Doing this four times plus my own visits to see her was a bit tiring yesterday, but I am glad they got to see their grandbaby. My sister was also kind enough to bring me dinner for last night and lunch for today. My mom is making me dinner for tonight and tomorrow. Food from family and friends has been completely awesome… thank you.
Holly went to recovery after the surgery and was moved several hours later to a room in Labor and Delivery for very close observation. The nurses and doctors kept incredibly close tabs on her because of the balloon and blood loss and were in her room every hour for vitals but really almost constantly. What was impressive to me was that the doctor that performed the C-Section was there with her checking in almost all night also. You don’t see many doctors who tend to their patients like that. I was very impressed. It was so busy in the room that the doctor and I had a discussion and she urged me to head home as I would not be able to get any sleep in her room. I agreed and drove home to get some rest around 1am.
Just a while ago Holly finally got a meal of clear liquids and I think that settled her enough to get some rest. As I type this Holly is finally taking a nap and getting some sleep. She only has an IV and Foley catheter. Both of those will be removed shortly and we will be moving to a post-partum room. She has been a real trooper and the nurse that just went off shift told her that all the nurses have been saying how much they like Holly and what a good patient she is. In fact, some of the nurses know that Holly is here going through this and they specifically asked to be her nurse for the shift. I also don’t remember how many times I have been stopped in the halls here by staff asking how ‘she’ is. But now I have to clarify with them… do you mean ‘she’ as in Holly or Abigail? What a new experience. All in all, I simply cannot tell you how impressed I am with OB-GYN North and St. David’s North Austin Medical Center and Women’s Center of Texas. They are a true blessing.
Holly may be discharged as soon as Monday. But we really have no idea how long Abigail will have to remain in the NICU. It depends on her independent progress. Again, thank you to everyone for your prayers and thoughts. We could have not have done it without you. But we ask you to keep it up! We still have a way to go.
So I am sure everyone knows or has heard women have crazy dreams while they are pregnant. I had some pretty wild and vivid dreams before pregnancy but these during pregnancy have just been weird. I have had a dream about my little brother as a child being thrown into a lake by our pastor’s son and when I went to jump in to save him I stopped myself and called for help instead. I had a dream about us having a social gathering at our home and Roger smoking something illegal which I was not happy about and gave him a lecture in the dream. I had a dream about the maternal fetal medicine doctor calling us to tell us they made a mistake and we are actually having a boy. Don’t worry we have checked at every ultrasound that we are still having a girl. I even had a dream about being on a cruise with Shaquille O’Neal for a reality television show and his first ex-wife (I don’t even know if he has an ex-wife or how many ex-wives he has, but this was a dream.) and I hit it off really well and spent a whole production day talking and enjoying each other’s company. I even shared my testimony with her. Yes, that’s a strange one. I don't even watch basketball. The latest really weird dream was a couple mornings ago and it involved my mom. If you know my mom you know she is country and crazy and I mean that in the nicest way. All of my family is shaking their heads in agreement right now. She does stuff all the time that makes us roll our eyes, shake our heads and laugh our butts off. See the picture below of my mom in a blind fold John Deere tractor driving contest. She's fun and crazy. When I told Roger this dream after I woke up that morning he almost spit his yogurt out laughing so hard. She is hilarious. Now on to the actual dream.
So my mom was driving my vehicle on Highway 21 from Smetana, the community where I grew up, and Bryan. Smetana is about 10 to 15 minutes outside of Bryan, Texas. She was driving a little crazy. Nothing really new here. Sorry mom. (I know she will read this.) And I said something to her about her driving. I don’t know if I was pregnant in this dream or not. So we’re driving down Highway 21 and it’s really curvy in my dream. It’s not super curvy in real life. And I keep seeing grass as we are driving along almost like I’m flying right above the top of grass. I don’t know if my mom is swerving on and off the road or what but I see grass over and over again. At one point I told my mom I felt like she should go the speed limit. So she sped up really fast. Obviously she was going under even though she was driving crazy. Still seeing grass in between these other events. We came around a very sharp turn and almost hit a semi as it was crossing over the highway which is divided in the between the East and West lanes. And of course I said something to her about her driving so crazy and we were almost in an accident. As we are driving along, I look out the window to the right where there was a steep driveway to a closed business and there were football players in full uniform running drills up and down the driveway. This is weird because there is no school anywhere near here. We continue to drive along and I look to the left across the divided highway and there are open fields full of crops like wheat or something. And I say to my mom, “When did they start growing grain here? It was always just cattle here before.” All of a sudden we are in the field but instead of there being wheat growing it is grass. I turn around a few times and it is just grass all around me. I say to my mom something about the grass. Then I ask her, “What is that?” I look behind me and there is a wild fire heading straight to us. I turn back forward and I see my parents’ house in front of us which is really far from where we were driving. My dad is sitting on a lawn chair under a big oak tree in their yard and my brother is walking past the side of the house. My mom is now near my dad. So I run to the fence that separates my parents’ yard from their front pasture as I’m yelling at them to get the water hose. I jump up on the fence yelling over and over again as I see them running into action. Someone hands me the water hose and I start yelling to turn it on. That’s when I woke up.
See told you it was weird. My mom might kill me for this. Or knowing her she’ll just laugh her head off. ~ Holly