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
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