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