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!) :)
Monday, July 27, 2009
Saturday, July 25, 2009
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. :)
Thursday, July 23, 2009
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
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
Wednesday, July 22, 2009
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
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
Tuesday, July 21, 2009
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
Thank you for understanding and lots of love for our friends and family. Hugs- H
Monday, July 20, 2009
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
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
Saturday, July 18, 2009
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.
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.
Friday, July 17, 2009
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.
Mommy & Me
Hi everyone. I wanted to pop in to give some updates on what's been happening in our world the last few days.
Lena and I spent a little more than 4 hours at MD Anderson yesterday and around 4 hours this morning getting last minute tests run, bloodwork, MRI, consent forms signed, etc. These have been some long days but necessary to make sure that not only are we ready but that the various departments at the hospital are ready for Monday, most especially the neurosurgeon. We haven't enjoyed the visits but obviously want him to have as much information as possible for accuracy on Monday morning. For Lena's MRI today, they placed little sticker dots across her forhead and behind her ears. These will act as "markers" for the 3D MRI that Dr. Demonte will use during the surgery. However, these lifesaver stickers have to stay on through the weekend. That should be a nice challenge for us and give us something to focus on- keeping 7 sticky lifesave dots on a 5 year-olds head for 3 days! Lena's a little concerned about people looking at her and laughing but she's so resilient that I think she got over it by the time we finished shopping for new pajamas for her and mommy and had lunch. :) We are heading out to the circus in the morning and I asked her if she wanted a hat, headband, scarf, or anything for her head and responded fairly adamanently, "No." That's my girl. She'll have moments but she is full of strength and I think under that angel baby exterior is a tough little girl who will prevail and grow stronger through this journey.
You know, having triplets has been a blessing in so many ways that are too numerous to describe. We've had experiences and adventures that are unique and challenging since the moment we found out there were three babies getting ready to join our family. The logistics of having three at one time can be overwhelming- just the idea that they outnumber you gives you reason to pause and take a deep breath! One of the biggest challenges we've faced is that bonding "one-on-one" time that parents have with their children. We've always tried to create those times when someone could go alone to the store with daddy or run an errand with mommy but it rarely happens that it is an event that the child wants to do or chooses; I mean really, running over to Home Dept isn't what they wake up dreaming about accomplishing for the day! We tried that early on but no matter what it is we plan or how wonderful that time is that you're spending with one child, there are always consequences. Even if the other two have had a great adventure as well, once they are all back together they want to know why they didn't get to do whatever the others did. It's kind of like the craziness of the bank teller giving us two balloons and one lollipop when we go through the drive through. Does she even know the amount of turmoil that causes??? Really, are ya crazy? If you don't have three of anything, don't even bring it out in the open. It just isn't worth the meltdowns! :) Okay, so you get the point.
Well, lately Lena and I have been having a heck of a lot mommy and me time- just not in the way I dreamed about. We are closer than we've ever been and I know my youngest daughter (by 2 minutes) better today than I did yesterday or a week ago. I'm really trying to build on that to give her strength for what is coming. We are making plans for our time at the hospital, went shopping for new pajamas for both of us and have had good talks about what toys would be best during recovery. These aren't exactly the conversations I was hoping for this summer but no matter, they accomplish the same thing. We are building memories together and will get through this together. I wouldn't want the experience for Kira and Naia but hope that through some alternative methods, I will have the chance to bond with them individually as well. Maybe the fallout and consequences didn't seem worth it to me before but now they do. For each of them to have mommy's undivided attention and to laugh, hug and talk together in the way that Lena and I have been, it's worth it.
So... I've learned something. I love the relationship I'm building with Lena and know that Kira and Naia deserve that same type of relationship with me. I just need to work a bit harder on building it; it will be so worth it for them and for me.
Lena and I spent a little more than 4 hours at MD Anderson yesterday and around 4 hours this morning getting last minute tests run, bloodwork, MRI, consent forms signed, etc. These have been some long days but necessary to make sure that not only are we ready but that the various departments at the hospital are ready for Monday, most especially the neurosurgeon. We haven't enjoyed the visits but obviously want him to have as much information as possible for accuracy on Monday morning. For Lena's MRI today, they placed little sticker dots across her forhead and behind her ears. These will act as "markers" for the 3D MRI that Dr. Demonte will use during the surgery. However, these lifesaver stickers have to stay on through the weekend. That should be a nice challenge for us and give us something to focus on- keeping 7 sticky lifesave dots on a 5 year-olds head for 3 days! Lena's a little concerned about people looking at her and laughing but she's so resilient that I think she got over it by the time we finished shopping for new pajamas for her and mommy and had lunch. :) We are heading out to the circus in the morning and I asked her if she wanted a hat, headband, scarf, or anything for her head and responded fairly adamanently, "No." That's my girl. She'll have moments but she is full of strength and I think under that angel baby exterior is a tough little girl who will prevail and grow stronger through this journey.
You know, having triplets has been a blessing in so many ways that are too numerous to describe. We've had experiences and adventures that are unique and challenging since the moment we found out there were three babies getting ready to join our family. The logistics of having three at one time can be overwhelming- just the idea that they outnumber you gives you reason to pause and take a deep breath! One of the biggest challenges we've faced is that bonding "one-on-one" time that parents have with their children. We've always tried to create those times when someone could go alone to the store with daddy or run an errand with mommy but it rarely happens that it is an event that the child wants to do or chooses; I mean really, running over to Home Dept isn't what they wake up dreaming about accomplishing for the day! We tried that early on but no matter what it is we plan or how wonderful that time is that you're spending with one child, there are always consequences. Even if the other two have had a great adventure as well, once they are all back together they want to know why they didn't get to do whatever the others did. It's kind of like the craziness of the bank teller giving us two balloons and one lollipop when we go through the drive through. Does she even know the amount of turmoil that causes??? Really, are ya crazy? If you don't have three of anything, don't even bring it out in the open. It just isn't worth the meltdowns! :) Okay, so you get the point.
Well, lately Lena and I have been having a heck of a lot mommy and me time- just not in the way I dreamed about. We are closer than we've ever been and I know my youngest daughter (by 2 minutes) better today than I did yesterday or a week ago. I'm really trying to build on that to give her strength for what is coming. We are making plans for our time at the hospital, went shopping for new pajamas for both of us and have had good talks about what toys would be best during recovery. These aren't exactly the conversations I was hoping for this summer but no matter, they accomplish the same thing. We are building memories together and will get through this together. I wouldn't want the experience for Kira and Naia but hope that through some alternative methods, I will have the chance to bond with them individually as well. Maybe the fallout and consequences didn't seem worth it to me before but now they do. For each of them to have mommy's undivided attention and to laugh, hug and talk together in the way that Lena and I have been, it's worth it.
So... I've learned something. I love the relationship I'm building with Lena and know that Kira and Naia deserve that same type of relationship with me. I just need to work a bit harder on building it; it will be so worth it for them and for me.
Tuesday, July 14, 2009
How tough can it be?
Without a doubt the toughest moment, and it was a moment, in my life was those few seconds when the realization of what the doctor was saying to us actually penetrated my brain and became our reality. Our daughter has a brain tumor. Before even the implications of that had set in... the tests, the surgeries, treatments... was just the moment of understanding and knowing that I understood nothing. She has a tumor in her brain. I thought that was pretty damn tough.
Until tonight.
Telling my daughter that she has tumor in her brain was worse. We didn't go into details but we didn't lie. We told her the doctor had to go in to try to help her get better. "Make a hole in my head?" she asked. "Why can't he go into my leg and go up that way?" Well, sounded reasonable to me as well. Even for a 5 year-old the idea of someone going into your head is just a yucky concept. Lena cried and wanted to know how much it would hurt. Would they poke her hand again? Would they make her go to sleep again? Where would the hole in her head be? Would she sleep at the hospital? Is the bed white? "I don't want it to be white. I want a pink bed."
Britt and I reassured her that we would be with her the entire time before and after the surgery. I think this helped and it wasn't too long before she claimed she didn't have any more questions and wanted to go watch Dragon Tales. Guess the short attention span actually does come in handy sometimes. :) A few more minutes and Mommy might have had a nervous breakdown!
Kira and Naia seemed to take the news easily with little understanding. Of course, it isn't their brain and they found out they get to spend several days and nights at Aunt Alli's house. Their biggest question, "Do we get to swim?" Ahhhh, yes, we'd love for them to understnad a little bit and lovingly pull Lena into their arms and hug and love on her but the reality for them is they have no clue what we're talking about. They haven't been at the dozen doctor appointments in the past few weeks. They haven't been poked, prodded, knocked out and x-rayed. I'd like to think they will develop some empathy through this experience but right now I'm mostly relieved that both conversations, with Lena and then with her sisters, took all of 10 minutes.
10 minutes and I'm completely wiped out and emotionally drained. So, this morning it seemed the toughest moment was the realization that my daughter has a brain tumor. That moment now seems insignificant compared to actually telling my daughter she has one.
Until tonight.
Telling my daughter that she has tumor in her brain was worse. We didn't go into details but we didn't lie. We told her the doctor had to go in to try to help her get better. "Make a hole in my head?" she asked. "Why can't he go into my leg and go up that way?" Well, sounded reasonable to me as well. Even for a 5 year-old the idea of someone going into your head is just a yucky concept. Lena cried and wanted to know how much it would hurt. Would they poke her hand again? Would they make her go to sleep again? Where would the hole in her head be? Would she sleep at the hospital? Is the bed white? "I don't want it to be white. I want a pink bed."
Britt and I reassured her that we would be with her the entire time before and after the surgery. I think this helped and it wasn't too long before she claimed she didn't have any more questions and wanted to go watch Dragon Tales. Guess the short attention span actually does come in handy sometimes. :) A few more minutes and Mommy might have had a nervous breakdown!
Kira and Naia seemed to take the news easily with little understanding. Of course, it isn't their brain and they found out they get to spend several days and nights at Aunt Alli's house. Their biggest question, "Do we get to swim?" Ahhhh, yes, we'd love for them to understnad a little bit and lovingly pull Lena into their arms and hug and love on her but the reality for them is they have no clue what we're talking about. They haven't been at the dozen doctor appointments in the past few weeks. They haven't been poked, prodded, knocked out and x-rayed. I'd like to think they will develop some empathy through this experience but right now I'm mostly relieved that both conversations, with Lena and then with her sisters, took all of 10 minutes.
10 minutes and I'm completely wiped out and emotionally drained. So, this morning it seemed the toughest moment was the realization that my daughter has a brain tumor. That moment now seems insignificant compared to actually telling my daughter she has one.
Cute Quote
The following quote was spoken by Lena yesterday when I picked the girls up from VBS. Although it isn't the first time she or her sisters have said something to this effect, it's the first time I memorizpaid close attention to the exact words.
We typically have sunglasses on hand for all three girls when we're out and about mainly because of the dialation in Lena's left eye. It causes extreme brightness and she needs to completely close her eye when out in the sun. We've encouraged all three to wear them but especially her.
After I picked the girls up from VBS, Kira grabbed two pair of sunglasses, the pink ones of course. Naia has red Power Rangers glasses. No way would she be caught in girl sunglasses! :) Lena asked, "Kira, please pass me my sunglassess. I need them. You know I'm dialated!"
Maybe this is only so funny to me but it just places me long long loooong down the road when being dialated will take on a whole new meaning. *smile*
Thank you to everyone for keeping up with updates through the blog site. I never knew much about "blogging" but definitely see the advantage. I know several of you have shared your feelings about blogs as well- makes me smile. Some days it is easy to talk and catch up with everyone but some days there is just too much going on. Plus, it helps me to know you all are with us on this journey. What wonderful family and friends we are blessed to have in our lives. However, please don't feel that you have to comment or respond. I'm checking my personal email almost daily so you are welcome to write to me there if you'd like.
holland_poulsen@hotmail.com
Love you all! Holland
To the Alief ISD Group: Thank you for the warm wishes, prayers and hugs that you shared today when I came up to work. I felt wrapped up in your strength and love and shared those feelings with the girls when I picked them up.
We typically have sunglasses on hand for all three girls when we're out and about mainly because of the dialation in Lena's left eye. It causes extreme brightness and she needs to completely close her eye when out in the sun. We've encouraged all three to wear them but especially her.
After I picked the girls up from VBS, Kira grabbed two pair of sunglasses, the pink ones of course. Naia has red Power Rangers glasses. No way would she be caught in girl sunglasses! :) Lena asked, "Kira, please pass me my sunglassess. I need them. You know I'm dialated!"
Maybe this is only so funny to me but it just places me long long loooong down the road when being dialated will take on a whole new meaning. *smile*
Thank you to everyone for keeping up with updates through the blog site. I never knew much about "blogging" but definitely see the advantage. I know several of you have shared your feelings about blogs as well- makes me smile. Some days it is easy to talk and catch up with everyone but some days there is just too much going on. Plus, it helps me to know you all are with us on this journey. What wonderful family and friends we are blessed to have in our lives. However, please don't feel that you have to comment or respond. I'm checking my personal email almost daily so you are welcome to write to me there if you'd like.
holland_poulsen@hotmail.com
Love you all! Holland
To the Alief ISD Group: Thank you for the warm wishes, prayers and hugs that you shared today when I came up to work. I felt wrapped up in your strength and love and shared those feelings with the girls when I picked them up.
Monday, July 13, 2009
VBS
One week until surgery...
We have had a busy weekend mostly spent cleaning house, organizing and purging the house of junk and trash. Do you ever get the feeling that your house has taken over and it's just out of control? Where in the heck did all this junk come from??? It fills every corner and nook and let's not even think about the closets. GRRRR.
With one week until the surgery, we will have a busy week. The thing I'm most excited about is that the girls are going to Vacation Bible School this week at Frist Methodist Church off of the Beltway and Westpark. They are signed up to attend three weeks of summer camp as well. I know Lena might not be able to attend any of the camps so I'm happy that she gets the opportunity to spend a few hours each day this week with her sisters at VBS. Plus, I'll feel better about Naia and Kira being at camp next week knowing that it isn't a brand new environment for them.
This week we will go up to meet with the pediatrician at MD Anderson so that Lena will have an idea of where she'll be for recovery. I'm thinking I'll take Kira and Naia up as well so when they visit after the operation it won't be brand new. We will meet with the neurosurgeon on Friday to go over last minute details. Then Lena will go in late Sunday for a last minute MRI before the operation.
I'm planning on talking to the girls about everything tomorrow or Wednesday. I want Lena to have a few days to process before Friday so that she has the opportunity to ask the doctor any questions she might have. Dr. Demonte asked her last week if she had any questions and she wanted to know what her brain felt like. He said it was kind of mushy.
There was a poster on the wall showing the parts of the brain and she wanted to know if it was different colors like a rainbow. The doctor had this look of, "Huh???" I explained that the poster had the different parts shown in various colors. :) She thought her brain would be pretty like that as well. She was a wee bit disappointed to learn that it was just kind of a yucky gray color.
Next, he explained that he'd have to give her a haircut. She was like, "Nooooooooo!" Then she asked him how much. He told her he'd just cut the part at the front where her bangs are. She smiled and sweetly said. "Okay. That's not too much." Then she flipped the hair in the back over and said that she'd just do that and wear it to cover that part up. He laughed and said sometimes he has to comb the hair from the back of his head over the top to the front too. :) The way that children's minds work is amazing and they say the funniest things!
I think explaining to Lena and then talking to Kira and Naia might be one the hardest things I do through this. Thinking about how much to explain and how to explain it- giving enough information so that they will understand but not too much that they're scared and anxious. The reading material says to use the correct terms if possible so that they don't think they are "bad" words. However, the idea of telling my angel that she has a brain tumor just breaks my heart. I'm sure when the moment comes it will work out and probably not be nearly as frightening as I'm imagining. The girls often ask if there are really monsters in the world. How can you honestly say no? Explaining to them about the brain tumor will be like that. I won't lie to them but I will do whatever I can to comfort and reassure them that we will all be all right.
Okay, time to get off of here and start filling some trash bags so that I can see the corners of my rooms where everything has been shoved!
We have had a busy weekend mostly spent cleaning house, organizing and purging the house of junk and trash. Do you ever get the feeling that your house has taken over and it's just out of control? Where in the heck did all this junk come from??? It fills every corner and nook and let's not even think about the closets. GRRRR.
With one week until the surgery, we will have a busy week. The thing I'm most excited about is that the girls are going to Vacation Bible School this week at Frist Methodist Church off of the Beltway and Westpark. They are signed up to attend three weeks of summer camp as well. I know Lena might not be able to attend any of the camps so I'm happy that she gets the opportunity to spend a few hours each day this week with her sisters at VBS. Plus, I'll feel better about Naia and Kira being at camp next week knowing that it isn't a brand new environment for them.
This week we will go up to meet with the pediatrician at MD Anderson so that Lena will have an idea of where she'll be for recovery. I'm thinking I'll take Kira and Naia up as well so when they visit after the operation it won't be brand new. We will meet with the neurosurgeon on Friday to go over last minute details. Then Lena will go in late Sunday for a last minute MRI before the operation.
I'm planning on talking to the girls about everything tomorrow or Wednesday. I want Lena to have a few days to process before Friday so that she has the opportunity to ask the doctor any questions she might have. Dr. Demonte asked her last week if she had any questions and she wanted to know what her brain felt like. He said it was kind of mushy.
There was a poster on the wall showing the parts of the brain and she wanted to know if it was different colors like a rainbow. The doctor had this look of, "Huh???" I explained that the poster had the different parts shown in various colors. :) She thought her brain would be pretty like that as well. She was a wee bit disappointed to learn that it was just kind of a yucky gray color.
Next, he explained that he'd have to give her a haircut. She was like, "Nooooooooo!" Then she asked him how much. He told her he'd just cut the part at the front where her bangs are. She smiled and sweetly said. "Okay. That's not too much." Then she flipped the hair in the back over and said that she'd just do that and wear it to cover that part up. He laughed and said sometimes he has to comb the hair from the back of his head over the top to the front too. :) The way that children's minds work is amazing and they say the funniest things!
I think explaining to Lena and then talking to Kira and Naia might be one the hardest things I do through this. Thinking about how much to explain and how to explain it- giving enough information so that they will understand but not too much that they're scared and anxious. The reading material says to use the correct terms if possible so that they don't think they are "bad" words. However, the idea of telling my angel that she has a brain tumor just breaks my heart. I'm sure when the moment comes it will work out and probably not be nearly as frightening as I'm imagining. The girls often ask if there are really monsters in the world. How can you honestly say no? Explaining to them about the brain tumor will be like that. I won't lie to them but I will do whatever I can to comfort and reassure them that we will all be all right.
Okay, time to get off of here and start filling some trash bags so that I can see the corners of my rooms where everything has been shoved!
Friday, July 10, 2009
On to MD Anderson...
Our first meeting with Dr. Demonte was this morning at the MD Anderson Brain and Spine Center. This was a very different appointment than the previous ones. First of all, Lena was the only child in the area. This was a little uncomfortable but I think good for her. She was dressed up and received a lot of positive attention from patients and nurses.
Dr. Demonte reaffirmed everything that had been explained to us by Dr. Whitehead. Lena has a tumor in her cavernous sinus that is either pressing against her third nerve or might actually be a part of the nerve. It is a very rare location for a tumor to appear in a child and there have only be about 20 documented cases (I think I got this right.) Dr. Demonte has performed about 5 of these operations on children which is more than any other doctor in the world. So, although his experience isn't great, it's the best there is. We don't know what type of tumor we are dealign with but we do know that it's located in a very delicate area with a lot of nerves that could be affected if they try to remove it. So, at this time, the goal is to biopsy the tumor to find out what we're dealing with. The doctors would like to relieve the pressure off of the nerve and/or remove the tumor but it doesn't seem like that will be likely for this first operation.
Things we know... or as always, think we know...
The issues with Lena's eye will probably not reverse and most likely will deteriate further after the operation. She has good vision from her left eye but the pupil is still unusally dialated and she has since begun to lose movement in the eye. More than like her brain is adapting to this and using the images from her right eye to compensate.
There is a possibility that Lena carries a genetic syndrome that will increase her likelihood of further tumors developing throughout her life. She will be tested for this as will Kira and Naia.
Lena's operation is scheduled for July 20th at MD Anderson. She will be in the hospital for 4-5 days for recovery. During that time there will be a complete analysis done of the tissue to determine what type of tumor it is. Then we'll start discussing treatment.
Right now Lena is obviously aware that she has been spending a lot of time at the doctor's office. She's had sedation, MRIs, CT scans, blood work, etc. For her, a really good day is a day we go to the doctor and nobody pokes her or takes pictures of her head. :) Kira and Naia are also aware of the visits. However, the girls don't know what is yet to come. We've been spending as many days as possible filled with fun family activities. We swim a lot, have gone to the beach, have gone bowling, do a lot of projects, been to see a play (Aladdin), played at water parks, etc. Our goal is to fill all the girls cups with overflowing love so that they have good memories of this summer too.
I'll keep you posted on what's happening or on when my next mini-meltdown occurs. :)
We'd love to hear from you so leave us a note when you stop in to catch up with us.
Lots of love- Holi
Dr. Demonte reaffirmed everything that had been explained to us by Dr. Whitehead. Lena has a tumor in her cavernous sinus that is either pressing against her third nerve or might actually be a part of the nerve. It is a very rare location for a tumor to appear in a child and there have only be about 20 documented cases (I think I got this right.) Dr. Demonte has performed about 5 of these operations on children which is more than any other doctor in the world. So, although his experience isn't great, it's the best there is. We don't know what type of tumor we are dealign with but we do know that it's located in a very delicate area with a lot of nerves that could be affected if they try to remove it. So, at this time, the goal is to biopsy the tumor to find out what we're dealing with. The doctors would like to relieve the pressure off of the nerve and/or remove the tumor but it doesn't seem like that will be likely for this first operation.
Things we know... or as always, think we know...
The issues with Lena's eye will probably not reverse and most likely will deteriate further after the operation. She has good vision from her left eye but the pupil is still unusally dialated and she has since begun to lose movement in the eye. More than like her brain is adapting to this and using the images from her right eye to compensate.
There is a possibility that Lena carries a genetic syndrome that will increase her likelihood of further tumors developing throughout her life. She will be tested for this as will Kira and Naia.
Lena's operation is scheduled for July 20th at MD Anderson. She will be in the hospital for 4-5 days for recovery. During that time there will be a complete analysis done of the tissue to determine what type of tumor it is. Then we'll start discussing treatment.
Right now Lena is obviously aware that she has been spending a lot of time at the doctor's office. She's had sedation, MRIs, CT scans, blood work, etc. For her, a really good day is a day we go to the doctor and nobody pokes her or takes pictures of her head. :) Kira and Naia are also aware of the visits. However, the girls don't know what is yet to come. We've been spending as many days as possible filled with fun family activities. We swim a lot, have gone to the beach, have gone bowling, do a lot of projects, been to see a play (Aladdin), played at water parks, etc. Our goal is to fill all the girls cups with overflowing love so that they have good memories of this summer too.
I'll keep you posted on what's happening or on when my next mini-meltdown occurs. :)
We'd love to hear from you so leave us a note when you stop in to catch up with us.
Lots of love- Holi
And then... Texas Children's Hospital
Our first visit after hearing the news was to visit the neurologist, Dr. Whitehead. Dr. Whitehead was very reassuring and gave us more details and information than we could process at the time. I felt like I had been "whammied" and knew that I could only absorb a small amount of the information being shared. In my head I was thinking, "Brain tumor. Brain surgery. Shaving the head. Kira and Naia. Recovery. School. OMG..." Thank goodness Britt was there to ask the medically essential questions. We were very fortunate that Dr. Whitehead brought us in for an appointment even though he wasn't seeing patients that day. I'm not sure we could have waited over the weekend. We knew it wouldn't be good news but Britt and I both are the type who need to knwo what we're facing and tackle it head on. The doctor ordered blood tests and a CT scan to be completed over the next week. We also visited with a social worker, case coorindator and oncologist at this visit. It was a long exhausting overwhelming day filled with tears, worries and lots of love.
After the test results were back, we met again with Dr. Whitehead. However, based on the new information, he no longer felt he was the right doctor for our case or to perform the surgery. He recommended us to Dr. Demonte at MD Anderson, Brain and Spine Center. Dr. Demonte is an expert in tumors at the base of the skull and has more experience and knowledge about this rare form of tumors found in children.
After the test results were back, we met again with Dr. Whitehead. However, based on the new information, he no longer felt he was the right doctor for our case or to perform the surgery. He recommended us to Dr. Demonte at MD Anderson, Brain and Spine Center. Dr. Demonte is an expert in tumors at the base of the skull and has more experience and knowledge about this rare form of tumors found in children.
How we got here...
Okay, we aren't going that far back! Most of you know how the girls came into our lives. :) We have always felt very blessed to have our daughters as part of our family. It was quite a surprise to learn that there were three heartbeats... three babies... three girls... and although each day brings its own challenges, as we tell the girls, God picked the exact three girls that I needed in my life and picked me out as their mommy. He knew we all belonged together.
Now, as for how we got to this place with Lena's diagnosis...
In early May Lena had a fever one Monday after picking her up from school. This was in the midst of swine flu craziness and since I worked for a school district, I thought it might be wise to make sure she didn't have the flu and infect the whole elementary school!
On Tuesday morning as we were laying in bed waiting for our doctor appointment I noticed that the pupil in Lena's left eye was dialated quite a bit more than the right eye pupil. I brought this up to our pediatrician and she recommended that Lena visit an opthamologist. BTW, it turns out that Lena didn't have swine flu but she did have pneumonia.
At our first visit to the opthamologist, I decided he was a quack. He barely examined Lena's eyes and his big "a-ha" was for us to come back in two weeks. So, I found another doctor who specialized in pediatric opthamology. He was great, did a wonderful examination and came up with a diagnosis. We were thinking that the 3rd nerve from her eye might have been infected by the pneumonia. If that was the case, her eye should return to normal in a few months. However, he suggested we visit Dr. Edmund at Texas Children's Hospital who also specialized in neurology as well as opthamology. Dr. Edmund agreed but ordered a MRI to make sure of the diagnosis.
On the night after the MRI, just a few hours after we returned home, Dr. Edmund called. She explained that Lena had a mass in her brain and that she had scheduled us an appointment with a neurologist for early the next morning. So, our journey began...
Now, as for how we got to this place with Lena's diagnosis...
In early May Lena had a fever one Monday after picking her up from school. This was in the midst of swine flu craziness and since I worked for a school district, I thought it might be wise to make sure she didn't have the flu and infect the whole elementary school!
On Tuesday morning as we were laying in bed waiting for our doctor appointment I noticed that the pupil in Lena's left eye was dialated quite a bit more than the right eye pupil. I brought this up to our pediatrician and she recommended that Lena visit an opthamologist. BTW, it turns out that Lena didn't have swine flu but she did have pneumonia.
At our first visit to the opthamologist, I decided he was a quack. He barely examined Lena's eyes and his big "a-ha" was for us to come back in two weeks. So, I found another doctor who specialized in pediatric opthamology. He was great, did a wonderful examination and came up with a diagnosis. We were thinking that the 3rd nerve from her eye might have been infected by the pneumonia. If that was the case, her eye should return to normal in a few months. However, he suggested we visit Dr. Edmund at Texas Children's Hospital who also specialized in neurology as well as opthamology. Dr. Edmund agreed but ordered a MRI to make sure of the diagnosis.
On the night after the MRI, just a few hours after we returned home, Dr. Edmund called. She explained that Lena had a mass in her brain and that she had scheduled us an appointment with a neurologist for early the next morning. So, our journey began...
Hello friends & family...
Hi everyone. Based on a wonderful suggestion from my friend Kim, I've decided to start blogging about whatever is happening in our lives. As most of you know, right now we're in the midst of learning about and struggling through the news that Lena has a tumor in her brainstem that is affecting her 3rd nerve. The tumor is actually located in her cavernous sinus but more about the medical jargon later...
I hope that through the opportunity to blog about what is happening, I can create an outlet for my emotions and thoughts as well as record what is happening with the members of our family throughout this journey. This blog may also serve as a place for our family and friends to come and share with us their thoughts and feelings and as a way to stay in touch.
I hope you know we love each of you very much and are overwhelmed by the amount of support, prayers and love being sent to Lena and our family.
I hope that through the opportunity to blog about what is happening, I can create an outlet for my emotions and thoughts as well as record what is happening with the members of our family throughout this journey. This blog may also serve as a place for our family and friends to come and share with us their thoughts and feelings and as a way to stay in touch.
I hope you know we love each of you very much and are overwhelmed by the amount of support, prayers and love being sent to Lena and our family.
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