Update- Sorry it took a while!

Hi again. First of all, I'm sorry it took a while for me to write up an update from Lena's last doctor visit. We went to MD Anderson a few weeks ago on a Monday to get her checked for the clotting/fluid that caused the large bump on her head. Let me start by saying that typically our visits to the neurosurgeon are the least stressful of appointments. They usually get us into a room quickly and Dr. DeMonte is fairly punctual. Well, not for this visit. We waited in the waiting area for almost an hour before I finally went and asked to be given an idea of when we'd be called back. They seemed to have forgotten about us and there weren't any other patients waiting. Finally we were called into a room and a nurse we had never met was filling in for our usual nurse. She didn't know Lena's history so it was fristrating trying to ctach her up and fill her in when I knew we'd never see her again.

After another hour, we were told that the doctor was in the operating room. I didn't expect him to leave the OR to see us but I was getting agitated and Lena was getting bored and starting to melt down a bit. He finally called us from the OR. Yep, he just called into the room we'd been sitting in and never actually came to check her out.

So.. what we think we know. The doctor seems to think that the mass was a clotting of old blood, perhaps from the surgery that took place 4 months previously. He again stated that it was highly unusal and asked me to keep an eye on it. Although they had drained a large amount of the fluid the previous Friday, we needed to make sure there wasn't additional clotting and that her body was absorbing what was left.

As of now, there is still some fluid remaining but I don't think it's gotten worse. If this was to happen again, Dr. DeMonte would like to do a procedure where they put contrast (dye) into her brain to determine where the blood is originating from. We both agreed that she's been through enough and that we didn't want another procedure with anethesia right now. So, we're hoping this was a one time deal and that there's no need in the future.

On another note... Lena is really fighting against wearing her glasses anymore. She seems to have accepted that her one eyelid will not open and chooses to let it remained closed. However, at six years old, she doesn't understand the consequences. If she does not use the eye and keep strengthening it, she will lose her vision. It's a constant battle and it makes us feel so guilty. She's been through so much but we aren't willing to back down right now. We do hope that someday there might be a medical option that would help her gain use of her eyelid functions again but that would not do her any good if she has already lost her vision.

Keep her in your thoughts and send her strength.. oh, us too! :)

Love you lots! xoxoxo

Here We Go Again

Hi everyone. It's been a while since my last post on Lena's progress and what is happening with all of us. Honestly, I was hoping that it would be a while longer before I logged on with any updates, at least any medical updates.

Tuesday was a normal day, as far as normal goes. The girls went to school, I picked them up, came home, made dinner and they got ready for their bath. While in the shower, Britt noticed that Lena's head looked a bit strange and asked me to take a look. As soon as she came out of the shower my first thoughts were... ambulance or drive to the ER? Lena had a mass, or something, the size of a tennis ball growing in the middle of her forehead. Britt stayed with Naia and Kira and got them into bed while I headed to Methodist. *Thank you Aunt Alli and Nick for coming to be with us and distract Lena! We love you the mostest!

Well, although I was a bit freaked out... or a hell of a lot freaked out... Lena didn't seem to understand what was wrong. She was not in pain and had not seen her head. It was fairly distorted and since I don't have any medical knowledge or training, I didn't know if her head was going to blow up, if her brain was swelling or if possibly the piece of her skull that had been removed had shaken loose and managed to shift. All I knew was that it did not look good. So after a quick CT scan, background information and call to our neurologist, it was determined that it was probably abroken blood vessel- basically a large knot on the head like you would get from being hit with a baseball bat. The problem was, Lena hadn't been hit, hadn't fallen that day and hadn't bumped into anything. The ER doctor admitted that it was highly unusual and strange.

So on to MD Anderson Wednesday morning for a check in with the neurologist. Same story... interesting, not normal, unusual... However, he was not so sure it was blood. There was not any discoloration under the skin and no sign of trauma. He wanted us to wait a few days and come back today, Friday, for an MRI and follow-up. He let me know that there was a strong possibility that he would need to take a sample of the fluid to find out what it was.

Now we're at today's visit. Lena had an MRI this afternoon. The amazing news is that she was not sedated and stayed still for the entire process (25-30 minutes). Dr. DeMonte couldn't believe how clear her images were and that she did such a great job. I tell you what, that girl is amazing. :) However, he learned that the fluid was neither pure spinal fluid nor pure blood. It was some kind of mixture of fluids. He told Lena he would be taking a sample. Yep! She screamed bloody murder and cried so hard I think the hospital was shaking! I held her steady as he first inserted a needle to collect the sample and then again as he inserted a needle to drain as much of the fluid as he could. All the while she is screaming, crying and begging me to take her home. Whew... you would think the girl's been through enough. Then the doctor bandaged up her head and wrapped it up similar to how she looked coming out of surgery last July, like a turban. Then Lena was crying because she has two birthday parties to attend this weekend and felt she did not look pretty. She kept telling me that everyone was going to laugh at her. She looked defeated and heartbroken. We had planned a Dollar Store visit after the appointment and she didn't even want to go there because people would see her. (So those of you who get that. Kids NEVER turn down a trip to the Dollar Store!) She walked hidden behind me all the way out of the hospital and into the car.

Although it was a tough week and a tough day, we are hanging in there now. Lena's spirits are improved and when Naia and Kira came home today, they were eager to see her and give her some love. They also had notecards from each student in their class to give her wishing her to get well soon and telling her they hope she comes back to school on Monday. I'm going to post a photo of her reading her cards when I get them uploaded. They really brightened her day and made her smile. :)

So... here we go again but I think this time, we're a little more calm, a little more prepared. We head back to MD Anderson Monday for a check on her progress. I'll write a quick update then to keep you all informed.

As always- much love to you. Hugs & Kisses- Holland, Kira, Lena and Naia

Good News- MRI

Hi everybody. I'm sorry it has been a while since our last posting. Things have been busy around here as usual. I was waiting to post until I had some good updates on Lena's medical progress. We finally have good news! Yeah!

Last week Lena went in for her MRI follow-up. It hasn't been quite three months since her surgery although it seems like it happened years ago. The past three months have been filled with exhaustion, anxiety, stress but most importantly, love. We have so much love in our family. Don't get me wrong, there are still many days when I hear these words, "You are the meanest Mommy in the world!" :) I'd hate to give the impression that things are always rosy around the Poulsen household. But there seems to be a shift too. It might just be in my eyes but I do feel that I appreciate my daughters more and that my heart has grown to allow all of that love in. Kira, Lena and Naia have also grown in their ability to empathize with not only one another but with all others. It is common now that when we see someone out and about with a disability, the girls are more likely to comment on how we don't talk about how people look or make fun of people that are different from us. They are still 6 years old of course but they "get it" now in a way that they didn't before. It seems as if the students in Lena's class are more understanding as well so it's all good.

Oh... the good news... I better get this out before I start randomly writing about what we've been up to, our upcoming Halloween costumes, etc.

So last week Lena had an MRI at MD Anderson. It was quite a frustrating day. We were there around 6:45 in the morning and didn't get out until around 2:00 in the afternoon. We were scheduled to go see her neurologist Friday morning but they had called a few weeks ago to reschedule. So it wasn't until this past Wednesday that we got the results.
***Her MRI was clear. What does this mean? It means that the portion of the tumor that was left following the surgery is not showing any signs of regrowing at this time. We will return in 6 months for another MRI and then continue to check on the tumor, probably for the rest of her life although she might be able to extend the periods in between the checks to one year intervals.

After months of feeling that we were in a neverending tornado, I think we can finally take a reprieve and take a deep breath. We know we are not out of the woods but we sense that we can focus on our family, the holidays and our friends without thinking every minute about our next appointment, check up or results. Lena is struggling with wearing her glasses and hates to have her "good eye" patched but these are things we are working through. Right now she is happy and doing well in school. We are good.

Lena has had to learn a lot and go through a lot in the past 3 months. When we left the doctor's office on Wednesday, we were holding hands and walking to the elevator. Lena was excited because she knew we'd ride the escalator on the way out of MD Anderson! I asked her if she knew how happy Mommy was that the tumor was not growing back right now. She smiled and then turned to ask me if there were other tumors growing in her brain. Just not the question I was expecting. I told her there were not any other tumors and that she didn't have to come back to the doctor for a while. She smiled again and then asked me about the escalator ride and if we could go up and down two times. :) Of course we did. We had a nice ride down, up, down and up again!

So, I'll restrain from going on and on about all else happening but wanted to let you know that I'll check in to write every once in a while and let you all know how Lena, Kira and Naia are doing. If you ever want to reach us, you can always email at holland_poulsen@hotmail.com. We'd love to hear from you. We love all of our friends and family very much. We hope that you enjoy the cool weather and the time spent with your family. Hugs & kisses- Holland

Eye Surgery & Tears

Well, we knew today was going to have its challenges but the challenges that we faced were just not aligned with what we were expecting. After a hectic morning of getting Kira and Naia off to school, on "Picture Day" no less, we headed over to Texas Children's Hospital. Our arrival time was supposed to be 9:30 with surgery scheduled for 11:30. As usual, timing is always off so Lena's surgery didn't begin until a bit after 12:30. Because the morning was so crazy, Britt and I didn't get a chance to eat breakfast. Well, we could have but chose not to in front of Lena since she wasn't allowed to have any food or drink this morning. What we didn't realize was that we both needed to stay on the floor once we checked in and there wasn't any food or drinks allowed. It makes sense though. None of the kids scheduled for surgery could eat or drink so that'd be pretty cruel to have food and drinks all around.

However, Lena held up better than we did. She was in a great mood and spent most of her time playing and drawing pictures. We'd take turns with Mommy drawing a picture for her to color and then she would copy the picture on her own. At 6 years old, Lena has some skill! (She gets that from me!) Since I had talked to Lena about the upcoming surgery last Friday at our pre-op appointment, she was prepared and didn't have too many questions about what was happening. She was happy that she would not be "poked" while she was awake and that she got to choose a flavor for the mask that she would wear that would put her to sleep. She choose Bubble Gum flavor. :) All in all, the morning leading up to the surgery went fairly well- just long and void of food!

Lena's surgery took about an hour and a half. When Dr. Edmond came out after the procedure was finished, she let us know that the surgery was more challenging than she had expected. With the damage to Lena's eye, 3rd optical nerve and eye muscles, we weren't that surprised. I think we've heard something similar throughout this process. It seems that everything related to Lena's tumor and the outcomes have been more challenging and just not routine. Dr. Edmond does believe that the surgery was successful though and that is what matters most right now.

We went to the recovery area once they brought us back to find Lena sleeping. The nurse let us know that she had woken up briefly and was pretty agitated. They gave her some pain medication and she fell back asleep. It was hard to imagine because although Lena cried after her last surgery, she didn't seem overly agitated. Oh, what a surprise for us when she woke up again. Lena began screaming and crying. Although we were warned, it was unnerving to watch as blood flowed from her eye instead of tears. I'm sure they were tears with bood mixed in but it looked like pure blood. Britt had a moment of panic caling for the nurse but I think he just didn't hear her when she was explaining that it was to be expected. Lena did not want to be comforted and was beyond agitated. She was kicking, screaming and crying. My heart was breaking as I'm sure Britt's was but we knew that a lot of the reactions were from the anesthetic. What we weren't expecting was when Lena began crying out that her eye wouldn't open. I think the whole room heard my gasp as I realized what had happened.

Somewhere along the way, Lena must have thought that this surgery was going to "fix" her eye and allow her to open her eyelid. Up until now she has accepted so much of what has happened to her with a calm strength that is unusual for a 6 year-old. I think we finally reached the breaking point. She was so mad when I told her that this surgery was not to fix her eyelid. She screamed that I was the "meanest mommy ever." I just thought my heart had broken before. Now it was crushed. Not only had she thought that this surgery would fix everything, I couldn't tell her that it would ever be fixed. Lena kept asking when her eye would be opened, crying that it hurt and was itching, and screaming out that she wanted to go home.

For those of you that know Lena, you know she can be a "toot" at times and occasionally can be willful but overall, Lena has a calm quiet disposition. For her to be so angry and frustrated was somewhat shocking. But here's the thing, just as my moments have come when I've lost it and broken down, I think it was time for her. She has held up so amazingly and been so strong through everything she's gone through. I think that for her emotional health, it was good for her to be allowed the freedom to lose it as well. Who am I to think that she doesn't need that outlet and need to know it is okay to be upset and angry? Although it hurt to watch it happen, I'm almost relieved that it did. After a while of letting loose, Lena finally came to sit in my lap, drank a little apple juice and fell back asleep. Soon after we were released to go home. She fell asleep immediately in the car and slept the whole way home. Once in bed she slept for a few more minutes then woke up ready to watch some television.

Lena has eaten some dinner and watched some t.v. with her sisters. She's back in my bed now relaxing and getting ready for nighttime while Britt reads a book to Kira and Naia. She's good and again, hanging in there. I'll keep you all updated on her progress. She'll be home for a while recovering and then back for her post-op appointment on Friday.

Sidenote: A while back I wrote in a post about how we are adjusting to our "new normal". Here's an example of one way in which our lives have changed. On the way to school last week, Lena was singing the tune for Dr. Jean's "My Mother is a Baker". Instead of the words to the song as we know them, she was singing, "My brain it has a tumor, a tumor, a tumor, my brain it has a tumor and the doctor says, Bye-bye." Oh, what to think? Wow, my child can create her own lyrics to songs. That's damn impressive. Wow, my child is singing songs about brain tumors? That's just flat out intriguing. Maybe I should send some new lyrics to Dr. Jean for a follow-up medical album release? :)

All is good and we've made it over another hurdle. Recovery now and her follow-up MRI in about 2 weeks... We're getting there. Love you my friends, my family. Holland

Upcoming Surgery

Hi everyone. I know it has been a while since I've posted anything new. Much has been happening but just those day-to-day occurrences that we all experience. The girls are getting settled in first grade and we are getting back into routines to keep us sane. Over the summer I seem to have forgotten how exhausting the 45 minute car ride home with them is after a full day of work. We actually broke down and went to pick up another DS recently! Having just two seemed fine until they all three became fixated with them and then caused more problems than having none. :) Seems to be the story of our life... Let's get one and share. No, maybe we should get two since they like it. Oh hell, let's go pick up the third! I think this has been going on since we thought we could get by with just one battery operated swing. You'd think by now we'd learn our lesson but as you know, there have been just as many times that we bought three of something and 1, 2 or 3 of the items never get played with. I was sharing with a good friend a while back how one of the girls' favorite "toys" right now is a baggie full of Dixie cups. You know which ones I'm talking about? I call them "Memaw's Cups" because my grandmother always had them in her bathroom but we never did at home. I thought it was pretty cool that when we went to Memaw's house we didn't have to use our hand to scoop the water into our mouths after brushing our teeth. Anyhow. we have these for the girls to use to rinse out their mouths and one day Naia realized they'd make a pretty decent pyramid. Since then they've made castles complete with a moat and bridge, pyramids, cars, houses for Barbies, etc. If you haven't gotten a box, you should think about picking one up the next time you're at the grocery store for hours of fun for about $2!

The main reason I wanted to stop in to write tonight was because Lena's surgery is quickly approaching. She'll be going in Monday to have eye surgery. Although I'm worried about the surgery and her reactions when we talk to her about going back to the hospital, I'm really happy that the date is close. Lena has had to wear her glasses every day. That's great except that her eyes are looking in two different directions. We are encouraging her to wear them properly to hold her eyelid open but on the other hand, it has to be difficult to function, read, play or even walk when there are two of everything and it's blurry. She has to do it though or her vision will continue to deteriorate. Then, once she gets home, she spends approximately the two hours until bedtime wearing a patch on the eye that has good vision. So now we're asking her to navigate with only her weaker eye that isn't even looking straight ahead. She can barely see and she has to turn her head sideways because the eye is pointed out. Ugggg, there's just no downtime for her. But as she has proven over and over, she is a trooper. She complains a bit but we now give her a Starburst each time her patch is put on and continue to encourage her to wear the glasses when at school even though it's confusing.

The eye surgery on Monday will basically consist of severing the two of the remaining 6 muscles that control the eye movement that are healthy and then reattaching those two so that her eye is stable and looks straight ahead. This will dramatically decrease the amount of double vision she is experiencing although it won't completely correct it since it really isn't that often that your eyes are both staring straight ahead. It's got to be better than what she's got going on now though and hopefully after the surgery, she'll be more motivated to wear the glasses and keep her left eye open.

Lena should be coming home the same day as her surgery and then will need 3-4 days of recovery. I'm not really sure what she'll be able to do during the recovery period but I'm sure we'll find some fun things to do to occupy our time. Maybe it's time for another pedicure and waxing lesson? :)

Once again I'd like to just take a moment to say thank you. I know there are many of you out there who continue to pray for Lena and keep her in your thoughts. So many people stop and ask about her each day that it fills my heart. I continue to write because I've learned how much I need that venue to process my thoughts and feelings but when I'm writing I try not to think much about people actually reading. For those of you who continue to follow us on our adventure, thank you. For those of you who are silently sending us strength, thank you. For those of you who love my daughter and allow yourself to be connected to her, thank you. She is worth it. She will be the one who grows and teaches me and those around her about strength, courage and perserverence. She will be the one who shows compassion and who strives to give. Her sisters will be the ones who are the protectors for those that need it. They will be the ones who work for equality. They will be the ones who understand that it is the heart of a person that makes that person what they are, not the physical attributes. They are deserving of the thoughts and prayers being spent on them.

One other thought... for those of you who are moms, whether you have little ones at home or whether your children are entering adulthood or have been there a while, I realized something... You are the "how-to" manual. Listening to your stories, watching you with your children, observing your face when you talk about their accomplishments or their struggles, you are the ones that give the rest of us strength to forge ahead. We learn from you, each and every day. Those of you who live day in and out with children with disabilities yet show up to work with a smile on your face, those of you who had a son or daughter pass away yet you live to graciously share stories of them with us, those of you who have watched your son or daughter move to another country, those of you who let your children grow to be what they want to be instead of what you want them to be... you really are the how-to manual for those of us who are struggling or are unsure of whether we're doing a good job. (Here's my processing in action!) I learn from you. You give me strength and courage. Thank you so much from the bottom of my heart.

I'll come along next Monday or Tuesday with an update on how the surgery went to keep you posted. Much love to you my friends. :) Holland

Medical Updates- August 25th

Hi everyone. :) It's just me here with some medical updates on how Lena is doing. Tuesday was our "Medical Center Day". Since school just started on Monday, we didn't want Lena out multiple days so scheduled all of our upcoming appointments on one day, this past Tuesday. We began the day by arriving down in the Medical Center around 8:45 at Scurlock Tower. Lena was supposed to get fitted for her new glasses that have a ptosis crutch attached. She had picked out the glasses last Friday but the crutch has to be custom fitted to her eyelid. Since surgery on the eyelid is not an option right now and if the eyelid doesn't get opened she will lose her vision, we decided to try this out. I'll post a picture tonight or this weekend of Lena in her new glasses. Christy's Optical made the crutch and attached it to Lena's new glasses. She is the youngest patient they had ever worked with for a ptosis crutch before. Of course, they adored her and treated her like a princess. Basically a ptosis crutch is a wire (like the one used with braces) that curves around and attaches to the glasses at both ends. When worn correctly, it will 'grab' Lena's eyelid, pulling it up towards her eyebrow so that she can use that eye to see.

We finished this visit around 10:35 or so and were due at the Neuro Opthalmologist at 10:45 down at Texas Children's Hospital. So we hiked out to the car and headed off. Britt dropped us at the doors so we could run up and try to make it on time. To get into this appointment on this date, we had to be squeezed in between other appointments. If we choose not to do this, we wouldn't get in until mid-September so we decided to go for it. If you're more than 15 minutes late, they cancel your appointment and ask you to reschedule. So, we really really didn't want to miss the appointment! Well, even though we made it on time, we didn't see the doctor until 12:15. Uggggggh! Dr. Edmond was surprised to see Lena with her new glasses being worn. Apparently she hadn't seen a child that young using glasses with a ptosis crutch either. Lena's vision has definitely started to deteriorate in this eye and is now at 20/50. It was 20/40 only 2 weeks ago. We talked about options and the upcoming surgery. Basics- Lena needs to wear a patch on her strong eye for about 2 hours each day to strengthen the other eye and get the brain to "turn it back on". Also, because four of the six muscles attached to her eye are damaged, the eye is deviating to the outside. This is what causes the double vision. So, Lena will have another surgery on September 21st to align her eye frontward. The remaining muscles will be attached to the wall so that her eye will no longer have mobility. It will remain fairly stationary to look straight ahead. This is the most nonevasive correction there is but if for some reason it doesn't work, there are alternative options to consider. We figure we're due some positive feedback so are planning for this to be the one to get it done. :)

One thing we found out later that evening from a phone call from Dr. Edmond was that she is scheduled to speak at a symposium for about 1500 doctors and would like to use Lena as a case study. The rarity of utilizing a ptosis crutch for a young patient like Lena makes her good doc talk! I strongly believe in educating others and helping whenever you can so I easily agreed. However, while I was reflecting later that night, I realized that if she was going to talk about Lena's case, she will probably be extra careful with my baby and do the absolute best job she can possibly do. This gave me so much comfort. I'll take everything I can in terms of making sure Lena has the best care possible and this seemed to fall into our lap. So- good news there.

We finally got out of this appointment around 1:15 and had our last appointment at MD Anderson at 2:30. However, we needed a food break. I was craving some serious caffeine too.

So, off we ran to grab some Taco Cabana to eat on our way. We were actually hoping that if we got there a little early, we might get in and out. Yeah, wishful thinking and a good lesson to us. We arrived shortly after 2:00 and were sent back to an exam room around 3:00. We met with the nurse practioner for about 30 minutes and then waited for the doctor. And waited. And waited. He finally showed up around 4:15. This doctor is a neuro-oncologist that specializes in genetic disorders/syndromes. He assessed Lena as well as both Britt and myself. After an hour, this is what we got out of the visit. (BTW- I'm sure we were told a lot more information but at that point we were brain dead and couldn't process too much more. On the other hand, Lena was full of energy and cleaning out the sink in the patient's room! I think she developed an almost unhealthy obsession with hand sanitizer on this day!)
Anyhow, basics... because Lena had a tumor grow in such a rare location for a child, there is the possibility that she has a genetic syndrome relating to chromosome 22 that might mean she would have reoccuring tumors growing in this area of her brain. On the other hand, it might be a spontaneous mutation- a one time only deal. The only way to know for sure is the genetic testing. If Lena was determined to have this deficit in chromosome 22, then both Britt and I, as well as Naia and Kira would need to be tested. Apparently the chances of another multiple (one of her sisters) having the same syndrome would be increased because of their development happening at the same time. Although we want to know, no- we need to know, whether this is something we will be facing repeatedly or if we can focus on just managing through the here-and-now, it's going to be tough. The questionnaire and other information gathering sessions about our genetics will be long and arduous. Sending Lena's samples off to a genetics lab will cost anywhere from $3000-$5000 and it isn't covered by insurance. So, I don't think it's eally optional but it also isn't our priority. We need to help Lena get through this next surgery in September and then in early October we begin the MRI testing again to assess whether the tumor is regrowing and at what rate. So, yes it's important but not as much so as some other things on our plate right now.

Okay, I think that brings you all up to date on the medical appointments from Tuesday. Now I'm going to share a little bit of heart breaking news. Lena was so much more confident going to school on Wednesday after she got her new glasses. I wouldn't say she was thrilled or excited but she was so much more ready than she was on Monday. Although she still held tightly to my hand walking in, she had her head held up high and was looking at the people around her and making eye contact. Unprompted, her sisters had told her she looked amazing in a multitude of ways on the way to school. (I was so damn proud of them!) She was just obviously more confident and ready to face the world.
At lunch that day, yesterday, Lena was sitting next to her friend from Wee Care, Kennedi. Another little girl at the table across from then turned around, pointed her finger at Lena and said, "Ugly!" I could just picture this scenario in my mind when Britt told me about it. I inhaled sharply and thought I was going to throw up. I knew it. He knew it. We knew she would get hurt. I just can't believe it happened on the day when she was finally able to hold her head back up. Lena is smart and caring. She's kind and full of heart. I know this hurt. I also know that she wouldn't do anything about it. She probably hung her head and stopped eating. However, Kennedi wasn't having any of it. Kennedi immediately got up and went to talk to the nearest cafeteria monitor/teacher. I don't know what all happened then except that the adult talked to the little girl and I hope, really hope, Lena learned a lesson. Not about how cruel people can be which I'm sure she learned very quickly, but I hope she learned that true friends give you strength. True friends love you no matter what happens to you and stand up for you. I owe Kennedi an extra special present for the next holiday!

You know we talked to Lena about what happened as we do everything but similar to Monday, we learned something else through this incident. We cannot possibly protect her at all times. The best we can do is build her confidence when we are with her, teach her and her sisters how to react and give them all the tools they will need to navigate through life. We will use the little girl's comments to teach our children how harmful it can be to talk about people who are different in any way. I know it hurt Lena. I felt like I had failed her. I know Britt did too. We are trying so hard as parents to work our way through this but nothing prepares you for it. I know I'm trying my best each day and that some of the decisions are excruciating. I really would like for someone to give me the "How-To Manual" now for raising three daughters. I hope you aren't just hiding it from me! I cry for Lena but I also smile for her. She is so loved and is such an inspiration to me and those who know her story and see her strength and resiliance. What a gift for her when she grows older when she realizes what an impact she's made on others' lives.

To end on a positive note- Lena woke up this morning and easily got ready for school. She was ready to hop right back on that wagon. Tonight after bathtime, Lena, Kira and Naia were all simultaneously singing We are the Champions while drying off and getting their hair brushed. Yes, imagine all three of them wet, naked and singing, "We are the champions my friends. And we'll keep on fighting 'til the end. We are the champions, we are the champions of the world...." Yes, they are. :)

Love you all. Thank you for keeping Lena in your thoughts and prayers and again, thank you to the Outley staff for taking care of those that are most precious to me. Hugs- Holland

First Day of First Grade

I didn't think I'd be posting today. Tomorrow we have three doctor appointments down in the Medical Center- one at Scurlock Tower, one at Texas Children's and one at MD Anderson. I figured I'd post in one of the days following to let everyone know where we go from here. What I didn't expect was that I'd have a complete meltdown this morning at the girls' elementary school.

We knew today was coming and I knew that Lena was going to be nervous. Over the past week, I've had conversations with her and her sisters about school beginning. We talked about how they are first and foremost responsible for taking care of one another. That's always been our motto. When I dropped them off at school each morning last year I'd ask each girl in turn, "Kira. Who are you going to take care of today?" She would reply, "Lena and Naia." "Lena, who are you going to take care of today?" Her response, "Kira and Naia." And then I'd ask the third, "Naia, who are you going to take care of today?" "Kira and Lena," would be her reply. So, this was really no different except we discussed how people might treat or react to Lena's appearance. Granted, I didn't bring this up. The girls brought up the idea of someone making fun of her so that led to these discussions.

I also spent time talking with Lena about how children or adults might ask her questions about her hair, her scar, her eye. We role-played different responses she might give which included:

• I had surgery. (Although we also talked about how a lot of kids wouldn't understand what this meant.)
• I got sick.
• I don't want to talk about it right now.

We figured those would pretty much cover what she might want to start with and if she wanted to give more information, she could. She knows a lot about what's happening to her.

Last, we had several conversations regarding wearing her sunglasses to school. This was the toughest. Her dad figured if she was allowed by the school, we should let her. I felt fairly adamently against this. This ended up being a decision I debated all day in my head today. Yes, Lena is supposed to get glasses that will have an attachment that will pull up her eyelid when she is wearing them. Yes, Lena will have surgery to place her eye forward so that she doesn't have double vision. Yes, we are taking steps in hopes that Lena will be able to see out of her left eye. But, she won't always have her glasses. This is who she is. This is her life and this is what she needs to learn to accept so that she can accept all that she is and all that she can become. I both want to shield her and also want to give her the tools she needs, including confidence, so that she has self-acceptance. I think this will be the best thing we could do for her in the long run. I imagine she won't have the surgery for a while and will need time to recover before wearing her new glasses so should we allow her or encourage her to wear the sunglasses at school during that time? Should we start treating her differently and giving her special treatment? Should we provide that means of allowing her to hide who she is? Tough questions and there probably isn't a right or wrong answer. All I know is that I feel fairly strongly that she accept that no matter what, she is beautiful, intelligent and my angel.

So, after all of these talks, I thought we were ready to begin first grade. I knew it might be a little tough this morning but I had no idea. As soon as we were in the car on the way to school Lena told me her tummy hurt, her head hurt, everything hurt. I knew she was anxious and worried. When we got there she gripped my hand as we walked down to the cafeteria. Once there she kept her head bent down with her chin towards her chest and wouldn't make eye contact with anyone. Once seated, she turned her body so the child next to her couldn't see her. My heart was breaking. My tough brave child looked completely defeated and it was only 7:30.

I took the girls to their homeroom where their wonderful teacher, Ms. Torres, waited for them and greeted them with smiles and hugs. I got Naia and Kira settled but Lena wouldn't let go. She told me she didn't feel good and if I let her come home, she promised to come back to school in a few days. I took her into the hallway and held her close and reminded her of all we had talked about. I promised her it would be all right. I was going to be back around lunch to help out so told her I would pop in to say hello. She didn't cry. She didn't whine. She just asked me not to leave her. That was all it took. From years in education, I know the best thing to do is to make sure your child knows you love them and that they're safe. And then you leave. That's what I did. I hugged her and let her hug me. I kissed her and told her I loved her. I told her that her sisters would be near. And then I left.

I barley made it to the front office before the tears started spilling. I walked by the principal, Ms. P., and asked if I could go to her office. Before I even got through the door, I was melting down. My heart was just hurting so bad. My little girl was hurting and I knew that this would be one of the worst days for her. But I also knew that she would make it through. She would be okay. The staff at Outley will keep an eye out for her. Pam went to check on her. Her teacher would get her engaged in activities and build a community within the class. I knew this but it didn't stop me from just losing it. And I did lose it... completely.

There wasn't much to do except accept and spend my day wondering if I had made the right decisions. There were moments when I wasn't sure and thought that on Wednesday she could wear her sunglasses if she was still that worried. But then I knew, it was the only choice I think I could live with right now. I want her to stand tall. I want Lena to reach her full potential and I want her to be a strong young lady and woman when she grows up. Do I want my 6 year-old to be hurt? No, but she will be at some point. I don't want her to get teased but eventually that will probably happen too. I don't want anything bad to ever come near her, Kira or Naia. But as a mother, I know that it isn't possible to place them in a bubble. She is in a wonderful environment surrounded by people who love her. She has friends in her classroom as well as her sisters. It didn't make it any easier to get through the day but I did. And you know what? She did too. I don't for a minute think it was easy for her and it was probably harder facing her peers than most of what she went through at the hospital but she didn't cry- not once. She was happy to leave school for the day when I picked them up but she wasn't so upset or sad that she complained. She knows she'll be going back on Wednesday and she's ready. She told me she really liked her first grade teacher so, "Thank you, Ms. Torres." I know as teachers we all want to make a difference and it isn't always easy to tell if we do. You did today. You not only made a difference to Lena. You made a difference for Kira, Naia and their Mommy.

I'll still write in the next few days when I get a chance but I want to share something that goes along with the story. I lost it today and it was okay. I've been a crying mess before and I have no doubt I'll have more to come. But it was good. There's always a lesson to be learned. I'm not a pretty crier. My eyes get bloodshot and I'm just a mess. But I don't mind so much now. I think if my child went through all that and I didn't cry, that would make me worried. If I didn't second guess my decisions, that would be a mistake along the way. If I didn't want to protect and save her, that would mean my heart was closed. So, it wasn't fun and I don't want to do it again at the school but I'll give myself this one. It was bound to happen sooner or later. :)

Friends- Part 2 Actions Speak Louder Than Words

There's a phrase we've all heard... "Actions Speak Louder Than Words." I'm not sure how often we pay attention to this but when you think about it, this phrase has been repeated in different forms and genres through time. I've been talking to a really good friend about this recently. It comes into play in a lot of different areas of my life but right now, through everything that is happening, it counts- a lot.


The musical group, Berlin, wrote a song in the 80s called "No More Words" about a similar idea.


Randy Pausch, professor and lecturer from Carnegie Melon, talked briefly about this concept in his "Last Lecture: Really Achieving Your Childhood Dreams." If you haven't read his book or seen the video of the lecture on You Tube, it is well worth the time. He has since passed away from pancreatic cancer but the words he has chosen to leave behind for his children are powerful. At one point, Pausch talks about advice he wants to leave for his daughter when she is older.
It took me a long time but I finally figured it out: when it comes to men that are romantically interested in you, it's really simple: just ignore everything they say, and only pay attention to what they do. It's that simple. It's that easy.
Again, same idea in a different scenario.

So, what I'm learning about while reflecting and sharing ideas back and forth with my friend is this: I've learned a lot more about the people around me from the actions that are taken during this period of our lives. The words given are comforting and uplifting. They are heartfelt, sincere and full of love. The words mean something and show me how much we are on people's minds.

However, the actions of the people in our lives touch my heart and soul. The hugs shared, the time spent praying and thinking of us, the gifts of love... these actions are often what gets me through day to day. It isn't what I'm given or what my daughters might receive that matter, it is the love behind the actions. It is the idea that a room full of co-workers would stop and take the time to send us love and prayers. It is the thought and concern that took place for the people at Lena's elementary school to welcome her on Meet the Teacher Night that eased her worries about starting first grade next week. It is the tear falling down someone's cheek when they tell me they've been worried about us, it is the action of my sister taking my other daughters that allowed me to focus on Lena, it is the person who offered to bring us food for our family at the hospital whom we had never met, it is the basket of loving gifts that people joined together to create for Lena, it is my mom's office that put together a bag of all things "piggy" for Lena to make her smile. Oh, the list goes on.

Never, never have I had so many people come into my life and offer what has been offered to us recently. The actions of our family and friends make me feel like the richest person in the world. We are okay. We are moving forward and staying on track with what we have to get done in the next few months. We're not anywhere near the point where we aren't scared to death, worried about Lena's future or forgetting that the tumor is most likely going to grow back. We're in the midst of frantically trying to find a way to get her eyelid opened so she doesn't lose her vision. She will have surgery again soon on her left eye. We're not nearly close to being done. But we are okay. We are loved and cared for. Every hug, every email, every card means something to us. Every action taken with us in mind is a part of this adventure and a part that matters. Although I'm not sure how well I've expressed my gratitude to each one of you that has taken the time to send me a note letting me know we are in your thoughts, please know that I do appreciate it. I feel it all and share it with the girls. They are learning that people are good and loving and that those who care about you, will step up, will take the time, will offer what you need, when you need it most. That's a life lesson that they won't soon forget.


To my friend... I hope that every day I show you how much you mean to me. I know some days I just tell you but I hope that mostly, my actions speak louder than my words.


Next Tuesday, we will have three different appointments in the Med Center relating to Lena's eye, upcoming surgery and begin some of the testing to find out if she might have a genetic syndrome related to tumors. When I have the chance, I'll update the blog letting everyone know how the appointments went and where we go from here.

Love you much. xoxoxoxo Holland

Friends- Circle of Prayer

I haven't posted much lately because there hasn't been much happening out of the ordinary. We've been busy with me going back to work, the girls have been at church camp and we're crazily trying to get everything ready to begin first grade on Monday. But, a couple of things have happened that I thought were well worth sharing or at least writing about so that I don't forget them and can share them with Lena, Kira & Naia when they're old enough to understand everything being shared in this blog. Both have to do with friends and what you get out of a conversation with a good friend and what you do with what you get.

First of all, I had a friend that I've known since my first year teaching in Alief (oh my, 17 years ago...), Becky, stop by at work the other day as she was picking someone up. We spoke briefly about how Lena was doing, the power of prayer and faith and just the overall idea of what you learn when it seems life is at its toughest. One thing we discussed had to do with the love and strength of the people I work with. On the day of Lena's surgery, I had heard that some people at work might get together and have a moment of silence or a time for a quick prayer for her health and recovery. I knew this but at the time, my mind was just focused on the moment and how much I love my daughter as well as trying not to break down in the waiting area at the hospital! I didn't really think about the logistics of it even after a few other people mentioned it. I'm not sure why but when Becky stopped and brought it up the other day, it hit home. I was actually able to visualize what had happened during those moments even though I was in my own bubble at the hospital just trying to stay strong and full of faith. She told me about how a group of people came together, stood in a circle, held hands and prayed for Lena at the moment that she was going into surgery to have the brain tumor removed. I thought I was going to just have to sit down and cry right there in front of the administration building. Why hadn't I understood before? Why didn't I have the full picture? I may not have known exactly what was happening but I'll tell you something. I felt it. I just knew when I was waiting, and waiting, and waiting, that there were waves of love being sent to my daughter. Then, and now, I have had the sense that we are in a bubble of love and strength. So many people have asked me how I stay so strong or mentioned that they aren't sure they would have that strength. The strength isn't coming from me. I'm just the one who is helping Lena and my other daughters see the love and strength. I am in a bubble of love from people I love, people I care about and people we have never met. I don't even begin to try to understand it but it is there.

Most of you know that although I have faith, my beliefs don't lay with one church or one religion. I believe in love, hope and the goodness that's in the world. I believe in God and believe in prayer but I equally believe that the way we act towards one another is a true sign of our religion and beliefs.

Back to my story... what was amazing about this conversation with Becky is this. I never told Lena. I told her how people cared about her and wanted her to get better. She knows that the people I work with put an amazing basket together for her. She heard and I think understood that. But I didn't tell her about the prayer circle. I don't know why. Maybe I didn't think she'd understand or maybe I was worried about how she'd react. For whatever reason, I didn't. Until after I talked with Becky. Friday, Lena and I had an appointment down in the Med Center. On the way down there, I told her. She had a look of complete 'wonder' on her face. Her first questions was, "For me?" Then she asked about what they said to God and did I see it. I had to explain that I was at the hospital with her so no, I wasn't there. She only asked a few more questions but they were all so heartfelt and I know that telling her about this incredible gift made her feel so loved and cherished. We had just left my work where everyone was so accepting and loving towards her so I'm sure she was picturing all of these people in her mind, holding hands and sending love to her. What a gift the prayers were but what a more precious gift because she now knows.

I have a friend to thank for bringing that back to me and allowing me to feel the act of love in a way I could then share with Lena. If you know Becky, you know that she's got one of the biggest hearts in the world. She opened it to me that day by showing me her 'wonder' at what my Alief family gave to me and mine.

My mother... and Hope.

A few weeks ago as this journey of ours began, I had a single thought going through my head, "I want my mommy." I wanted to call my mother, hop onto her lap and have her snuggle me close. It just seemed that things were happening, as they do in life, and this was one of those times when I was hoping my mom would give me strength, kiss my forehead and make it all better. But then I realized something, I'm the mother now. Although in my late 30's, I completely felt that I was a child, not ready to deal with the decisions and consequences that were about to unfold. For the first time, I realized that this was my responsibility. I couldn't run to my mom and have her make it all better. It was my turn to be strong for my daughter, my turn to kiss her tears away and my turn to carry the weight of those choices and consequences on my shoulders. For the first time, even though my daughters are now 6 years-old, I understood so much more of what my mother has sacrificed and given to me throughout my life. She has carried the burden, she has sheltered me and been strong when I'm sure there were so many moments where she would have preferred to huddle in a corner and cry. My mom lived through having her newborn daughter born with a club foot and watched her wheeled away at 3 days-old for just her first surgery. She lived through the torment of knowing that there wasn't a damn thing she could do about it except be strong and have hope. That was just the beginning of the journey for my mom. At this moment I can't remember one time when I needed her that she wasn't strong, loving and well- there for me. I think back now and wonder how many moments there were that I didn't see where she weeped for me, was scared for me or felt that the weight was too much to bear.


I love my mother, Beverly- my mommy. I have no doubt that it is because of her and my dad that I am sitting here typing and sharing rather than curled up in my bed weeping at this exact moment. My eyes are full of tears and I am ready to scream at the world, shut down and run away. This is a tough moment and what I am sure is just one of what has come before and one of the many that will continue to come in the future. And although I'm crying and still want my mom, I am getting through this because of who she is and what she has taught me. She has been the best example of a mom that a woman could ask for. She is smart, strong and most importantly, she has always been there. I want to be her when I grow up. :)


“Learn from yesterday, live for today, hope for tomorrow.”


Here's my quote for the day. Right now I very much dislike the idea of hope but know that without it, a full life is not possible. After Lena's surgery, I was ready to accept that she was no longer going to be able to use her left eye. The 3rd cranial nerve was severed and there was undeniably no chance of it being fixed, reattached, etc. The neurosurgeon made that very clear to us. So although she has vision in that eye, she cannot open her eyelid and now has lost most movement of her eye. Then... we started to hope. Just maybe she could have plastic surgery to partially open the eyelid. Just maybe she could learn to use her eyebrow to open the eye. Just maybe she had enough muscles left so that her left eye could somewhat follow her other eye. Just maybe she would have partial ability to use this eye if we found the right doctors and made the right decisions for Lena that would affect how she lived the rest of her life. Again, I had accepted that this eye would remain closed and was so grateful that the tumor didn't cause worse problems than this. I was thankful that my daughter was with me and that I could hold her, love her and tuck her into bed each night. But then there was hope.


We've had two doctor appointments in the last two days. One with our original neuro-opthalmologist (sp?), Dr. Edmonds from Texas Children's Hospital and then one this morning with Dr. Yen from Baylor College of Medicine Eye Clinic. It's frustrating when doctors advice and suggestions don't match but I think the bottom line is this... Lena is not a candidate to have her eyelid opened up. Also, Lena does not have enough mobility in that eye at the moment to be able to see even if we did. She would have extreme double vision. We can't open up her lid and leave it exposed. If we did the surgery, that eye would pretty much remain open and be completely unprotected. Think about how many times you blink when you think you're about to be poked in the eye, when an eyelash falls near or sand blows in it. She wouldn't have that ability. So, for the hope that has been built up in the last few weeks, it is now greatly weaned. It has been a hard day. There's no other way to say it. I love her so much and want so much to make this better. We are not without hope because we still have some options to look into but it's a struggle. Apparently we only have 3-5 weeks to do something before she begins to lose her vision in that eye. Her brain is going to start shutting it down. So I think tonight I'll just cry and crawl into my bed after the girls go to sleep and then tomorrow, we will all wake up with renewed energy and hope.


When I told Lena last night that we were again going to see a doctor and he was someone we haven't met before, she asked me if he was going to open her eye. I told her that he wouldn't be doing anything but looking at her eye today and talking to us about some ideas he might have for getting it to open a little bit. I'm not sure how much of the conversation she understood as we were in the doctor's office but the main thing I'm hoping tonight is that she doesn't ask me anything. I feel horrible that I can't directly face this with her but she is 6. I might have moments where I lose sight of my hope but I'm not willing to let her give up hers. As I said before, I won't lie to her and we've been honest with what all is happening but I'm still not ready to tell her that her eye will never be able to open. I'm not ready to take away her hope. I think that she needs it right now more than ever.


I know the updates are not as frequent but I will keep you posted when new news arrives or there's something that pulls at my heart strings. I'm back at work this week so we'll be busier than ever. For each of you that gives me a smile when I see you, thank you. It isn't easy to go into details about what all is happening when we stop to chat. It's hard enough to keep my composure as it is but I continue to feel that we are all wrapped in your kind words and thoughts.


Okay, I'm wiping away the tears. I'm going to go hug Kira, Lena and Naia and spend a few hours laughing and loving with them. Then it will be time to crawl into bed and let go.


Mom.... I love you more than you could possibly imagine. Thank you for always, always loving me, protecting me and giving me strength when I most needed it in life. I really do want to be like you when I grow up.

In My Daughter's Eyes- Martina McBride

In my daughter's eyes
I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes

In my daughter's eyes everyone is equal
Darkness turns to light and the world is at peace
This miracle God gave to me gives me strength when I am weak
I find reason to believe
In my daughter's eyes
And when she wraps her hand around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer

I realize what life is all
hangin' on when your heart has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes
In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy she made me
For I'll be there
In my daughter's eyes

Video: http://www.youtube.com/watch?v=eLS0Y40WwlA

Family Trip to Louisiana

Every summer in late July or early August my family heads to Louisiana for a weekend away at Coushatta in Kinder. This includes my mom and stepdad, Beverly and Fred, my sister Alli and her family and my two stepbrothers and their family. I think the first time my mom planned this family adventure was when the girls were about to turn two or maybe it was the summer before they were three. All I remember was that it wasn't all that relaxing trying to keep track of triplets in an open environment like that. We are ALL about containment and control when it comes to new situations. We know now and have for a while that they outnumber us and anything can happen! While in LA, we stay in the chalets at Red Shoes RV Resorts & Chalets and reserve five chalets side-by-side so that we all have our own space but can meandor back and forth between chalets to visit or find the snacks, cold beer or margaritas. :)


This year we were pretty sure we wouldn't be attending with the rest of the family. My mom suggested that they not go at all since we might not attend but that didn't sit all too well with me. I didn't want them all at home thinking about the trip they were missing since there wasn't anything that could be done and I know my mom really enjoys this weekend away. However, I didn't call to confirm our reservation or plan anything in advance. My family knew that chances were we wouldn't be able to go and that Lena would be recovering. My sister offered to take Kira and Naia with her family but that seemed like such a tough decision to make since Lena was already missing out on so much. I wasn't sure I could bear to see the disappointment in her eyes as her sisters talked about the trip that she wasn't a part of. I mean, one-on-one time is hard to come by in this family and appreciated by Kira, Lena and Naia but I don't even think a weekend full of mom and dad's attention would make up for missing this trip that the girls were highly anticipating.


As you know, Lena had brain surgery on July 20th and was released from the hospital on July 25th barely eating and not walking all too well. Miraculously by early the next week, Lena seemed in great spirits and was eating, walking and playing almost as if the surgery had never happened. So... we decided to go. The rest of the family headed down on Wednesday night or early Thursday but we didn't leave until Friday morning. Britt had already missed so many days of work while at the doctor appointments and hospital that we didn't want to use anymore.


Last year I hit a jackpot during this family weekend away. I hit a line of Pharoah's on a quarter slot machine and thought it was amazing. $12,500. Yep, that's quite a haul. Britt and I smiled from ear to ear all the way home. This year, we smiled 24/7 because we were able to attend at all. The girls got up early each day, stayed up late each night, swam all day, played with their cousins and had a wonderful time. There were a multitude of changes from that first trip to this one. Although still nervous about all those things moms and dads get nervous about, the girls were fairly independent and entertained. This gave us a chance to sit back, relax and have a few cold beers ourselves.


It was such a wonderful weekend. We didn't come back with money in our pockets but we came back with three happily exhausted, well fed, swimmed out almost 6 year-old daughters. :) This was our first adventure back together as a family and turned out to be more than we could have expected. Our "new normal" has begun...



Next up... How did anal retentive Holland deal with the fact that she did not have the girls' birthday party that would take place in August entirely planned by the end of June??? I'll let you know about my complete breakdown and recovery soon. :)

Doctor Visits & Staples

Hi everyone. I think this one should be short. :) It's been a long day filled with smiles and tears. We're still emotionally and physically drained and trying to get back into some type of normal routine. However, I think our "normal" has probably shifted for the imediate and indefinite future. Things change, shift, progress forward whether you want them to or not and the choice you have is to make the best of this reality or live in denial. It's hard though and I have no doubt will take everyone in our family some time to adjust.


We visited with a few doctors today. First let me tell you again how strong and amazing Lena is. She went in to have 39 staples removed from her head beginning in one ear and across to the other. She was scared and was hoping she could talk Dr. Demonte into leaving the staples in and just letting them be. She told me that people would just think they were a headband so it wasn't a big deal to leave them there. Pretty crazy, eh? She's really funny sometimes. We weren't sure how many staples there were so she counted them as he took them out. This helped distract her for the majority of the removals. About 2/3 of the way through she decided we should count by tens instead. Aren't those Outley kindergarten teachers great? She did scream and cry as the last 3-4 came out that were stapled in her ear. I imagine they were mighty sensitive but like a trooper she held on and mission accomplished.


Good news... staples are out and she is on her way to recovery and acceptance. Although we haven't directly told her, I'm sure she now knows that her eye is not going to open back up. There's just been too much talk around her for her not to pick up on the conversations. We will be heading back to Texas Children's Hospital to begin meetings with the neuro-opthamologist to discuss rehabilitation and possible ways that she might have surgery to give her some ability to see from her left eye. What I didn't realize until today was that time is crucial. I thought we had time to research and really think through the options but apparently if something isn't done, her brain will "turn off" her vision in that eye because it isn't being utilized. She has vision but without her eyelid open, her brain will adapt to one eye and that vision will be lost.


Other good news... the tumor was benign. I don't know exactly what all the technical terms are for it but basically, it was "really" benign. So although it rated low on the scale for being benign, there is still concern because it was rare in that instead of growing and pushing the nerve to the side, it grew in to the nerve and wrapped itself around it. Besides being in a delicate location of the brain and rare for a child, it grew abnormally as far as tumors go. This is why her 3rd nerve was severed.


Not so good news... we still have to go through genetic testing to determine if Lena has some type of genetic syndrome that would make her likely to have numerous tumors to grow throughout her life. We originally thought this was a blood test but apparently it is much more involved and could take months for results. Uggg... I just can't even think about this one. It's too unbearable. However, without a history of tumors in our families and because of the extremely small chance that a child would develop this type of tumor, it is a moderate to high possibility.


Worse news... Dr. Demonte told us that although he cannot possibly be 100% sure, because a portion of the tumor was left behind, it will probably grow again. We don't know if that might happen in one year, five years or ten years but he seems to think that it will happen at some point. Depending on if, and when, that was to happen, she would either need additonal surgery, radiation, etc. Again... I can't even think about this one much or I would become unable to get through each day.


So you see, we will never get back to "normal". What we have to do now is to adjust to our new "normal" and make it work. We will accept the good news and live in hopes that the other possibilities will not come to fruitation. We will come back together as a family, bringing Kira and Naia home this week, and move forward. We will focus on rehabilitation and/or surgery on the eyelid and wait as well as we can for our first 3 month MRI check-up in hopes that it will show no new growth.


It's been a long day, a long week and a long month but we will keep celebrating the good news, accomplishments and goals. As we do every minute of every day, we appreciate you and love you. If I could, I'd come and hug each of you and tell you personally.


To end on a good note and a smile-
I took Lena to get her first mani/pedi today. She smiled the entire time. The ladies were great with her and painted little flowers on her big toes and thumbs. If you've ever noticed, I'm partial to having those flowers painted on my toes too. :) She loved the experience but as I was getting my eyebrows waxed, told me she didn't want to come back if she ever had to do that! She asked me if I liked having it done and I gave her a crazy Are you kidding me? look. "Of course I don't like it honey but I need it," I replied. She said she never wanted to get it done. Believe me, when the girls get older, they will need someone who can wax kept on retainer! Not only are they already growing unibrows but they are dark like their daddy so it will show... alot!


Tomorrow all the girls and their cousins are going to watch G-Force. We're sticking to the regular movie rather than the 3D since I'm fairly sure it would not work with Lena but I think it will be a fun outing for us all.


I'll keep in touch and let you all know how we're doing. You are always welcome to leave a comment or send us an email at holland_poulsen@hotmail.com


Love you lots- Holi
(For those of you who don't know... my family calls me Holi so I go back & forth when blogging. I didn't want you to think I was developing a multi-personality disorder!) :)

I'm such a proud Mama Bear!

Hi friends and family. I'm going to be honest here. This one will be longer! There's a lot to share so if you only have 1-2 minutes, you might want to come back later. :)

Friday was a crazy day but one of the best days yet. Before telling you about everything that happened on Friday, let me start by saying that I am a very proud Mommy and Aunt. My children, niece and nephew surpassed my wildest expectations with their visit to the hospital on Friday morning to visit Lena. I know I had posted that this was a huge worry for me. I really thought that the reaction Kira, Naia and Summer (my niece) gave Lena would set the tone and stage for how she faced people and going places for the next days, months or years. They were so damn amazing.

At first, my sister Allison and I didn't think we would manage to get the girls up to the hospital for a visit. In the beginning Lena wasn't ready and then once we found out we were going to be discharged it seemed too late. Kira, Naia and Summer have been attending camp at First United Methodist Church all week and were coming home each evening tired and worn out. Thursday night didn't seem like a good time because they would probably be exhausted and grumpy. However, my sister also told me that when she mentioned how Lena was doing to the girls earlier in the week, Naia responded that Lena wasn't at the hospital. She was home with Mommy. The girls don't have the schema for what a hospital is or what goes on there so they couldn't even visualize what was really happening to their sister. If they came to visit on Friday once they were home, they still wouldn't understand. So Alli and I decided that the kids would miss camp on Friday and instead would sleep in and then come up to visit.

When Allison, Nick, Summer, Kira and Naia arrived on the pediatric floor, they met me in the playroom to talk before going to see Lena. I was so excited to see my girls. I had missed them so much and was waiting by the elevator to snuggle them up as soon as they arrived! Once in the playroom I read them a book called Parker's Brain Storm about a little bear who has a brain tumor. The hospital has a Child Life Department that helps kids understand what's happening to them and also works with siblings to help them understand. I talked to a very nice lady from this department about the best way to explain to the girls what was happening and she gave me a copy of this book. Next, Alli and I showed the girls pictures of Lena so that they would have an idea of how her head and eye looked and would have the opportunity to ask us questions. We also discussed how Lena must be feeling right now and brainstormed things that they could say to make her feel better. We also discussed things that might make her feel bad about what was happening that we didn't want to say. The girls seemed to get it and were anxious to see their "Goo Goo."

When we entered the hospital room, Kira and Summer went right over to see Lena. Kira told her, "You are beautiful Goo Goo" and Lena just smiled. Summer also told her how pretty she looked. Naia hid behind me for a bit. I think the pictures were overwhelming and it was hard for her to think about someone cutting open her sister's head. She did tell her that she had mised her but was a bit hesitant to look at her. We encouraged Lena to get up and walk to the playroom to play with her sisters. At first she was reluctant but finally agreed. Lena's walking had been unsteady and she was swaying quite a bit. I was worried some thing might happen to her in the playroom and she might get hurt. Obviously Mama's overprotective. :)

As soon as we entered the room Kira hopped onto a tricycle. This made Lena want to ride too so I helped her get her leg over the bar and sit down. I really thought, "There's no way she can ride that trike. She can barely walk to this room without wobbling." Boy was I wrong. She took off! Nick stood a bit away and I asked her if she could run him over. I barely saw the girl again! She spent a while chasing down Nick on the tricycle and then she played store with Kira and Summer. They would drive up to the window, order some food and the other one would prepare it in the play kitchen. I thought I was going to burst out in tears. They completely accepted her and she had the first beautiful spontaneous smile I had seen since before the surgery. Lena played with her sisters and cousins for a while and I could almost feel the life and personality of her coming back rushing in to her. It was amazing. I'm sure I'm not even close to expressing the wonder of it all but it was- wonderous. I have no doubt that that hour of time will have a lasting impact on how Lena approaches life from this moment on. Children have the capacity to show so much love and acceptance that doesn't compare to adults. Yes, they can be cruel and mean which I'm sure we will learn first-hand in the months to come. However, for this moment, on this journey, they gave my daughter something that neither Britt or I could give. For whatever reason, Lena's light began to shine bright the moment they entered that room and told her they loved her. Tears are leaking out of my eyes as I sit here writing about this while Lena is a few feet away playing with Barbies and Mermaids in the bath. Someone told me that God would give me the right words and actions when explaining all of this to my other daughters. I'm sure I could have done better but it doesn't matter. There is nothing that could have gone better. If you know Kira and Naia, you also know they have strong willful personalities and say what they feel when they feel it. I am extremely proud of Lena and her courage but I am equally proud of her sisters who gave her confidence, love and complete acceptance.

Sidenote... As I talked to Kira a bit later in the car on the way back from the hospital, we discussed how they would need to take care of Lena and protect her. She responded, "Mommy, if there's a bully... if a bully comes around... if he bullies her... I will... I'll... I will kick him in the butt!" Oh my gosh, I couldn't help but laugh! I almost said, "Kira, we don't use the word butt." Or was about to say, "Kira, we're lovers, not fighters!" Or started to say, "Kira, we don't fight like that." But what came out of my mouth was, "Kira, I love you." Her dad and I looked at each other, smiled and thought to ourselves, It will be okay. They will take care of each other.

Okay, so I won't go on about all the details of our homecoming but yes, we came home Friday afternoon. Lena played with her sisters and cousins for a bit before they left to go back to my sister's. She slept for 12 hours last night and woke up hungry. :) We're all exhausted and trying to get situated at home. However, we are SO glad we are home. Our beds feel good and there isn't someone opening the door every 10 minutes to wake us up. :) It's good to be home with my Angel Baby. We still have a long road ahead but we are heading down that road with our heads held high and our hands holding on to one another's. We're going to not only survive, we will thrive.

We love you all and look forward to seeing you in the next few weeks. We're open to visitors. :) We missed you! Please just call first to make sure we aren't sleeping or at the doctors. We still have lots of appointments and as always, Lena's needs come first. Much love to you friends and family- Holi

My friend Gayle's son passed away earlier this week at 30 years old. I just want to express my sympathy and love for Gayle and her family. My heart is breaking for you. Nobody can imagine what you are feeling. No one can even get close. I think we try not to think too hard because it is unbearable to imagine. All I could see on your friend's faces today was that they love you so much and would do anything for you. Their hearts were breaking, their tears were flowing and their prayers were surrounding you and lifting Kerry up. I just want you to know we love you and Lena is excited to come visit soon. :)

From Lena...

I love you. Thank you for giving me my presents. I'm feeling good.

Better Day Today... & Nick :)

Good evening friends and family. This post should be short.... well, I think it will be but sometimes I get going and can't seem to stop. :)

Lena had a much better day today. Finally! She actually requested bacon to eat this morning, drank some orange juice and told me she wanted to see her sisters. As the day went on, she stayed awake for a longer period of time, was weaned off the more serious pain meds, walked the halls, toured the hospital and attended movie night tonight to watch Horton Hears a Who. Yeah, "wow" right? What a difference 24 hours and a lot less medication makes. I actually saw a few glimpses of my daughter's personality come through today.

I almost couldn't help but laugh at one point when she flat out yelled at the occupational therapist that she WOULD NOT bend down to pick up a toy and that the lady COULDN'T MAKE HER. Whew. Lena was mad, mad, mad and it showed. She was overly tired and tempermental but I just wanted to shout with joy. Finally she was showing some personality and communicating. I felt bad for the lady who got the raw end of the stick but it was well worth it. Lena told her when she started that she was very tired and I told her Lena hadn't slept in a while. I figure she was forewarned. :) (((Isn't that horrible to enjoy something that came at the expense of another?)))... but it was funny!

Okay, now for the tough part of the day. Lena asked to be taken to the mirror on the back of our room's door. Although I knew it would have to happen, I wasn't ready. I hadn't quite figured out what to say or how to say it. So, I just did what felt right. We talked about the staples in her head- there are about 40. We talked about her shaved head and how the hair would grow back. We talked about why her eye is red and swollen and why we needed to keep putting ice on it.

We did not talk about why her eye was closed and how it would stay that way. I just couldn't do it. I didn't lie but I didn't tell her. I think she has been traumatized enough and it broke every piece of my heart to watch her facial expressions and slow realization as she looked at her reflection in the mirror. She sat stunned for a moment like she was waiting for me to introduce her to the girl in the mirror. I don't know that she even realized that it was herself. As the tears began to fall down her cheeks, she reached up to brush them away. Her hand went to her left eye where the eyelid is closed and just touched the eye, her lashes and then ran her hand over her shaved head and the numerous staples that hold her scalp together like a headband, from one ear to the other. I know I'll have to tell her and we will need to talk about the reality of the situation but it isn't happening today... or tomorrow... or this weekend... I have no idea when but neither of us is ready for it yet.

One of the doctors thought we should be released today. I told them no. I asked them how they could possibly release her when all she's eaten for almost 4 days has been 5 bites of peaches, 4 bites of jello and two strips of bacon. How could they release her when she hasn't walked more than two baby steps? Really, how could they release her to us to take care of her when nobody has explained how we should do that? So, I told them no. I'm open to being discharged tomorrow but they had better get on the ball and start working with us to figure out what she needs and how we can provide it.

Okay, so not so short of a post. :)

Good news... hope... we're going home soon. Lena's eating a little bit, talking a little bit and playing a little bit. She talked to her sisters on the phone tonight and gave the first spontaneous smile since we arrived Monday morning. Man, I thought I was going to cry as she told her "Goo Goos" that she loved and missed them. They'll be coming up tomorrow to visit. That will be a challenge in itself. I figure however they react to Lena's appearance will set the stage for how Lena takes on the rest of the world. Let's hope that Kira and Naia bring lots of love and understanding. Pray for that tonight please. I think it is hugely important to her confidence and recovery.

I'll post soon about our journey home.

I want to share one more thing...

Lena has the best cousin ever. Nicolas Charles Turnbough, "Nick", has been a consistent visitor and motivator for Lena. He has made her smile and engaged her in an art activity today. He has visited Lena every single day and sat with me on the day of her surgery. He has shown more strength and maturity at 13 than many adults I know. As we sat devastated about Lena's eye, Nick put it into perspective and basically stated that it was just an eye. Lena will still have a full life and have all the opportunities as other children. There may be some things she will not be able to do but there are a million things she can choose to do.
Nick... Lena and I love you! You are awesome and we are lucky to have you as a part of our family! Hugs & Kisses- Aunt Holi & Lena (Yes, I know that's just the way you roll. :) )

Thanks again everyone. Talk to you soon. Love Holland

Hanging in there...

Hello again everyone. First of all, thank you for following along with us on this journey and sending us your positive thoughts and prayers. Knowing that so many good people are a part of our life and that so many people love our children gives us strength beyond imagination. I started this blog in hopes of keeping a few people updated about Lena, her sisters and the rest of our family. What I've learned is that more people that I thought possible have been keeping up with us through the blog and I think that many feel they understand how it has impacted us since the day we were told Lena had a brain tumor. I'm learning so much about myself, my children, my family and my husband through this process. Maybe the insights I share will help others reflect as well.

As I've learned that more people are reading the blog I've thought about the personal aspect of it all. Many things I've related are not things I would normally talk about in conversation. I tend to hold many feelings close to myself and am always wondering when someone asks how you're doing if they really want a response or if a "I'm fine" is the more appropriate response. I figure on the blog, if you're reading and keeping up, you are interested in more than the standard response. So, I'll keep writing from my heart and whatever comes to mind. I don't think I have the energy to edit or censor my thoughts at this point. Please know though that I'm less restricted in my thoughts and feelings since you aren't standing in front of me watching the expressions that I'm sure are showing on my face.

As expected. today brought hope as well as worries. Dr. Demonte came to visit and gave us the initial results from Lena's MRI. It looks as if he was able to remove the majority of the tumor as he first thought. Because there was some of the tumor left behind, there is the possibility that it will grow again so we will closely monitor Lena in the days, months and years ahead. Lena's bandage came off this morning as well. Although the staples are numerous and go across her head from ear to ear, she still looks absolutely adorable. Her hair has been shaved in the front on top but she still has her long hair and ponytail in the back. She is sporting quite the "punk rocker" look. :) If any of you watch So You Think You Can Dance, you might remember the choreographer named Sonya who always choreographs super funky routines. Lena has a similar hairstyle as she does and it suits her. I'm sure once Lena sees herself there will be tears and worries about people laughing and teasing her. However, I think she's just beautiful. Her hair will grow back in time and she will build strength from whatever comes her way. I had surgery when I was close to Lena's age and wore a cast through most of 1st grade and used a wheelchair and/or crutches. I remember the fear and embarassment but also remember the compassion and understanding of those who accepted me no matter what I looked like. Lena is such an amazing child with an angel personality that I have no doubt that she will bring out the best in others and teach others empathy through her own kindness.

Because of the rarity of this type of tumor in children, Lena, Kira and Naia will go through genetic testing. This is something we are concerned about. If Lena, or the others, are assessed as having a genetic syndrome, this means that there is a strong possibilty that tumors will continue to grow throughout their life. For now we are praying that this is not the case. We have hope and faith that the worse has come and gone. It is unbearable to even imagine that Lena, Kira or Naia, might have a genetic disposition for a lifetime of tumors. So our thoughts are positive and we are keeping our vision of the future as tumor-free with a lot of years of health and growth.

Lena is out of ICU but is struggling. Although she is in recovery, she is still extremely lethargic and refuses to eat. It has been three days and she hasn't had more than a few bites of peaches and jello. She says she is scared to eat but won't elaborate. She actually isn't speaking or interacting much at all. I want so much to comfort her, hold her, soothe her and ease her fears but she rarely interacts with me either. This is the hardest part for me right now. I think everyone goes through moments where their child tells them they are a "bad mommy" or they say they don't love you but to have your child resist anything you are offering hurts beyond anything I can explain. I'm not stopping though. Every minute I let her know just by being here how much I love her. I touch her cheeck, tickle her arm, kiss her nose, and just tell her I love her over and over. Britt and I miss our Lena and are praying that we will see aspects of her personality return soon. We are worried and feel helpless.

I read recently (in some flakey novel about Fae no less :)) about the idea of how you live your life. In this book, it said that you have a choice: You can live your life with hope or you can life your life in fear. If you live your life in fear, you might as well be done living. The only choice in life is to have hope. Without hope, there is nothing.

Britt and I are both choosing to live a life of hope right now. This doesn't mean we don't have fear, that we don't break down and cry uncontrollably, or that we don't have moments of complete confusion as to how our world spun a new reality in such a short amount of time. It just means that we choose to spend the majority of our thoughts, time and effort wrapped around hope. Hope that this will all lead to a stronger more loving life for us and all three of our children.

Thank you all for the offers of food, visits, and anything we could possibly need. I know we haven't accepted much of the help or visits that have been offered but that doesn't mean that we won't in the future or that we don't appreciate it. We do. We love each and every one of you. The amount of compassion and love that you are sharing, even some of you that we have never met, is overwhelming but so appreciated. When we are ready for visitors, food, or anything else, please know that I will ask and let you know.

If we are not yet ready to accept your offers but you would like to do something, I have a few suggestions. You may contact my sister who is taking care of Kira and Naia and see if she needs anything. Not only would food probably be appreciated but my sister's house caught on fire just a few days before the girls went to stay there so her family is dealing with the fallout from that as well as adding a few members to the household. (By the way, I didn't talk to my sister before writing this so I might need to warn her first!)
Or you may donate something to MD Anderson or the Ronald McDonald House. There are kids here who spend months at a time in this hospital. DVDs, books, games, puzzles, etc. would surely be appreciated. There are so many families that do not live in Houston. I can't even imagine how they cope leaving their other children behind and the expenses required to travel here for months at a time or to come back once a month.

Okay, this has been a longer post than I expected. Thank you again for keeping up with us, thinking about us and loving us. We love you too.

I'll keep in touch and let you know how tomorrow goes and when we can expect to head home. I'll also let you know when we think it would be all right for Lena to have visitors. Hugs to each of you. Love much- Holland

Not Quite Ready for Visitors

Good morning friends and family. I just wanted to write a short note to let you know that Lena is not yet ready for visitors. She will be having tests run this morning including a CT scan and will also be moving out of the ICU sometime today we hope. Lena is doing great but is still sleeping most of the time. If you are planning to visit, please wait until tomorrow or Thursday to give her time to heal, rest and be with her family. This will also give us time to be with Lena which is where we most want to be right now. I'll keep you updated but you are welcome to call me later in the week if you'd like to come by to check on what would be a good time for visiting us.

Thank you for understanding and lots of love for our friends and family. Hugs- H

Trying to Stay Strong

Hi everyone. My goodness, it has been the absolute worse day of my life. But before we go any further, I should let you know that I hope that it remains the worse day of my life.

We arrived this morning at 5:15, checked in and were in the surgery prep area for about an hour or so. Lena was in a pretty good mood considering she was taken out of bed at 4:45. She told me she would do the huggie wrap (blood pressure check) and thing under her tongue (temperature) but then she wanted to go home. She also said Dr. Demonte could look in her head but she didn't want him taking anything out. He wasn't allowed. He could only look.

Man, oh man. She was so brave. She hopped up on the table and just sweetly said goodbye as they wheeled her away to the operating room. They said she did great and wish all patients were like her with her attitude. :)

Surgery began about 8:20 a.m. and we were told to expect approx. 8 hours. We would get updates but not much detail until the end. So we were surprised when a nurse came out and said the doctor was on his way around 1:45.

Dr. Demonte was able to get most of the tumor. However, the tumor had wrapped itself up and around Lena's third nerve and there was not any way to save it. He had to sever the nerve. What this means is that although Lena still has vision in this eye, she has lost all functions relating to this particular nerve which include the dialation of the pupil, movement of the eye and the ability to open her eyelid.

Right now Lena is sleeping. We found out the she is allergic to morphine so the Benadryl given to her has kept her sleepy. Her left eye is closed and beginning to swell. It will continue swelling for the next few days. She has woken up for brief moments and is fairly lucid. She has told me her booboo hurts, that she needs to potty and that she loves me. Hearing her say "I love you Mommy" was probably the only thing that kept me from complete nervous breakdown today.

I know my writing isn't nearly as coherent right now. I just don't know how to describe what we are feeling. I hurt for her, I worry for her and I love her so much that I would give anything and everything to make this not be happening. I don't want to tell her that her eye won't open again. I just don't. I know Britt is already researching this condition and won't even consider that it is permanent but for now and for the foreseeable future, it is. I don't want to face the moment when she realizes that her hair has been cut and shaved. I don't want to be the one who looks in her face when she realizes she has a cut across her forehead from ear to ear. I don't want to see any more pain or fear in my little girl's eyes. But I will. I will hold her hand through each of these events and make sure she knows that she is a beautiful angel. I will hold her when she cries. I will kiss her nose and hug her tight when she is scared. I will tell her everything that she needs to hear and begin to build the confidence in her that at one point my parents had to build in me.

Then I'll go in the next room and cry.

You can't help but walk through the halls of this hospital and not be grateful. There are a multitude of things that we could have found out today that would have been devastating and beyond conmprehension. We're thankful for the good news. The tumor is probably benign and they got most of it all. We will cry for the bad news, take a deep breath and start from this moment to keep going strong.

So, if you hear sobs in my voice either via writing or on the phone, understand that I'm crying when I can so that I can stay strong when it is needed.

We love you and thank you again for your loving thoughts, prayers, messages and support. Talk to you soon.

Love, Holland

Message From Lena

i love you to friends. i am happy. we went to the circus. we got cotton candy and snow cones. i got a elephant cup.

i went to the doctor. they poke me 2 times.

Dictated to Mommy:

I saw clowns carrying crowns. I saw elephants. There were clowns in the circus.

I have a pretty tutu on right now.

Surgery & Hospital Information

Lena's Surgery is scheduled for Monday, July 20th at MD Anderson.

• MD Anderson is located at 1515 Holcombe Blvd., Houston, TX, 77030 (directions below)
• Our check in time on Monday is 5:15 a.m. and surgery will begin fairly early in the morning after check-in.
• The surgery should last between 6-8 hours.
• Lena will be in the Pediatric ICU overnight and if all goes well, be moved to the pediatric ward on Tuesday.
• She will be in the hospital for 3-5 days for recovery and then home for additional recovery time.

I will update the blog after the surgery when I get a chance to let everyone know how she is doing. You are welcome to call and leave a message on my cell phone but I'm not sure how often we'll be checking voicemail that first day. You can also give my sister Alli a call and she can update you on what's happening.

Alief friends and family- I will call Greg Monday once we find out how the surgery went. Remember, it will be 6-8 hours so the call may not come until late Monday afternoon or night. He will keep you all posted for me. (Thanks Greg! You're an awesome "Boss Man".)

If you'd like to visit us at the hospital, please wait until after Monday and Lena is moved out of ICU. This will give us a chance to get our feet on the ground and get settled in. If you are bringing a child, please know beforehand that they have to get checked in on the main floor of the building to make sure they aren't sick. I think they are pretty cautious about this and I respect this procedure. I've seen a lot during the last few weeks that has opened my eyes and that breaks my heart. I'd hate for us to get anyone there more sick.

To get to MD Anderson...Travel down Main Street or take 610 and exit Main Street towards the Medical Center. Turn right at South Braeswood Blvd. Travel approx. 1.4 miles and then turn left at Holcombe Blvd and then right onto MD Anderson Blvd. You can then take an immediate right onto Bates into parking garage #10 or take a left to valet park. If you go into the garage, take the elevator to the 3rd floor and cross over to the hospital on the skywalk.