I meant to write a new update to bring in the new year last month but things seemed a bit hectic. Before filling you in with how we are let me tell you that I was beyond ready for this past year to come to an end and transition into a new one. Although I will always look back at 2009 as a year of tremendous growth for our family, I will never look back at it as a year of fond memories. Believe me, I am grateful for many things and every day, every moment, when I look at my daughters, especially Lena, I feel blessed that she is here. I know that there was the possibility she might not have been. Those aren't thoughts to dwell on but they are thoughts that deserve to be remembered. I have friends, and friends of friends, who have lost one their children over the past year. It's beyond my imagination how they manage to move forward and go on each day. They are truly amazing in their strength and resilience. So although I know each day was precious, I am happy that a new year has arrived and that one is gone. So long, farewell! Maybe it's just a sense of new hope and new beginnings. I want this year to be filled with love, joy and laughter. I want to hope and believe that each doctor visit brings us peace that the worst has passed. We aren't there yet. We seem to know this is more of a reprieve for a time rather than a conclusion but there is hope- always hope.
Most days we live with our "new normal" fairly well. There are still questions from the girls, still explanations about Lena's eye and her inability to open it on her own, still questions and discussions about her hair growing back and still questions about the numerous doctor visits that seem to always be on the horizon. But overall, we've adjusted, individually and collectively as a family. There was a day, not long ago, when I broke down and wondered how I had managed to go so long without these tears which had obviously been building up and preparing for a massive release. I occasionally watch Oprah shows that I've pre-recorded. I actually only watch about one for every 8 I delete so am not diehard watcher. However, there was one I recorded that had been sitting in my DVR waiting to be watched about Nate (Gosh, don't you love him!) and how he was going to work with the Billionair Matchmaker to set up a woman in her early 40s and help her figure out why she hadn't met "the one". Yes, I'm a hopeless romantic and enjoy these types of shows and do love me some Nate! So, I'm watching the show and this segment of the show ends with 40 minutes left for the show. Any Oprah watchers out there? Do you know what is about to happen?
So as this segment ends, Oprah introduces her next topic regarding how Nate is going to go help out a young boy, around 12 years old I think, write up a business plan to help with this cookie business he started. However, Nate realizes that the business plan isn't the 'real' topic. This young man lives with his parents and brother. However, he was actually born a twin and had another brother. You could tell by the story and pictures these two boys were close, loved and protected one another. One brother was diagnosed with a brain tumor when he was around 9. Okay, some of you can stop reading now if you want...
After being diagnosed, the boy had radiation. The tumor was not cancerous so they felt they had been successful in its removal. But no. The tumor regrew and this time it was malignant. Now, I didn't know a tumor could change from noncancerous to cancerous as it regrew. So now I am glued to the television although I know, I just KNOW KNOW KNOW, that I need to turn it off. I'm already crying and just have that feeling, in the pit of my stomach, that it's going to get so much worse. It did. I don't know what happened immediately after it was found out that the regrown tumor was malignant but only 3 months later, the boy passed away. So I lost it completely. I continued to watch the show and was having a complete crying meltdown.... tears, sniffling, red eyes.... When the show was over, I went into the bedroom where Britt was watching t.v. just crying, shaking, mumbling, "Did you know it could come back maignant? Did you know? Dd you know? What are we going to do????" I was obviously upset and terrified in a way I am not sure I had been even in the beginning when we were told Lena had a brain tumor. It was too much. My entire being was emotional without any rational thought at all. I wanted answers, I wanted reassurance, I wanted anything and anyone to tell me this would not happen to my baby.
Let me tell you, my heart is so filled with love for this family as well as hope for them. Although the journey is beyond difficult, you could tell that they are each finding their way to remember the joy and love of the son who died. The brother actually began the cookie business on a suggestion from his doctor to find something that mattered. He had fallen into a state of depression. When asked, he felt baking was something he enjoyed doing and something his brother would be proud of. What an amazing 12 year-old example of resilience! The other reason I love this family? Because they shared their story. They may not realize it but that night, hearing their story, watching their resilience, gave me strength. It might have seemed that it sapped me and knocked me down and that is true. It did. But each time you get knocked down and manage to pull yourself up, you come up stronger. As I said earlier, I don't want to forget , I don't want to dwell but I do want to always remember how precious each moment is. I want to remember how lucky I am that my daughter is still with me and that I am allowed to be loved by her and love her each day. She teaches me each and every day about the things that matter. Lena shows me what it really means to be resilient, strong and compassionate.
I was going to give a short medical update but as usual, what I thought I wanted to say and what I apparently needed to share were two different things. :)
So, to be brief, Lena is doing well. We recently had visits with her opthalmologist. She seems to be slowly losing her eyesight in her left eye but we're refocused on having her wear her glasses more often and patching up the other eye for at least 30 minutes-1 hour each day in hopes that we can strengthen the eye. A friend at work shared an article about some research being done with replacing nerves in this area of the brain so Britt and I think there is a possibility that maybe options will be available when she is older. Our job now is to help her not lose the eyesight and keep her healthy, physically and mentally, so if it does becomes an option, she will be ready to make that decision. Or if it doesn't, she remains the confident person she is right now.
In mid-April we will have our next rounds of MRIs, tests and doctor visits to analyze and discuss the tumor. I'll make sure to update then if not before. As always, thank you to those of you who keep Lena and our family in your thoughts and prayers. We love you. Hugs & Kisses... Holland
Friday, February 12, 2010
Sunday, November 29, 2009
Update- Sorry it took a while!
Hi again. First of all, I'm sorry it took a while for me to write up an update from Lena's last doctor visit. We went to MD Anderson a few weeks ago on a Monday to get her checked for the clotting/fluid that caused the large bump on her head. Let me start by saying that typically our visits to the neurosurgeon are the least stressful of appointments. They usually get us into a room quickly and Dr. DeMonte is fairly punctual. Well, not for this visit. We waited in the waiting area for almost an hour before I finally went and asked to be given an idea of when we'd be called back. They seemed to have forgotten about us and there weren't any other patients waiting. Finally we were called into a room and a nurse we had never met was filling in for our usual nurse. She didn't know Lena's history so it was fristrating trying to ctach her up and fill her in when I knew we'd never see her again.
After another hour, we were told that the doctor was in the operating room. I didn't expect him to leave the OR to see us but I was getting agitated and Lena was getting bored and starting to melt down a bit. He finally called us from the OR. Yep, he just called into the room we'd been sitting in and never actually came to check her out.
So.. what we think we know. The doctor seems to think that the mass was a clotting of old blood, perhaps from the surgery that took place 4 months previously. He again stated that it was highly unusal and asked me to keep an eye on it. Although they had drained a large amount of the fluid the previous Friday, we needed to make sure there wasn't additional clotting and that her body was absorbing what was left.
As of now, there is still some fluid remaining but I don't think it's gotten worse. If this was to happen again, Dr. DeMonte would like to do a procedure where they put contrast (dye) into her brain to determine where the blood is originating from. We both agreed that she's been through enough and that we didn't want another procedure with anethesia right now. So, we're hoping this was a one time deal and that there's no need in the future.
On another note... Lena is really fighting against wearing her glasses anymore. She seems to have accepted that her one eyelid will not open and chooses to let it remained closed. However, at six years old, she doesn't understand the consequences. If she does not use the eye and keep strengthening it, she will lose her vision. It's a constant battle and it makes us feel so guilty. She's been through so much but we aren't willing to back down right now. We do hope that someday there might be a medical option that would help her gain use of her eyelid functions again but that would not do her any good if she has already lost her vision.
Keep her in your thoughts and send her strength.. oh, us too! :)
Love you lots! xoxoxo
After another hour, we were told that the doctor was in the operating room. I didn't expect him to leave the OR to see us but I was getting agitated and Lena was getting bored and starting to melt down a bit. He finally called us from the OR. Yep, he just called into the room we'd been sitting in and never actually came to check her out.
So.. what we think we know. The doctor seems to think that the mass was a clotting of old blood, perhaps from the surgery that took place 4 months previously. He again stated that it was highly unusal and asked me to keep an eye on it. Although they had drained a large amount of the fluid the previous Friday, we needed to make sure there wasn't additional clotting and that her body was absorbing what was left.
As of now, there is still some fluid remaining but I don't think it's gotten worse. If this was to happen again, Dr. DeMonte would like to do a procedure where they put contrast (dye) into her brain to determine where the blood is originating from. We both agreed that she's been through enough and that we didn't want another procedure with anethesia right now. So, we're hoping this was a one time deal and that there's no need in the future.
On another note... Lena is really fighting against wearing her glasses anymore. She seems to have accepted that her one eyelid will not open and chooses to let it remained closed. However, at six years old, she doesn't understand the consequences. If she does not use the eye and keep strengthening it, she will lose her vision. It's a constant battle and it makes us feel so guilty. She's been through so much but we aren't willing to back down right now. We do hope that someday there might be a medical option that would help her gain use of her eyelid functions again but that would not do her any good if she has already lost her vision.
Keep her in your thoughts and send her strength.. oh, us too! :)
Love you lots! xoxoxo
Friday, November 13, 2009
Here We Go Again
Hi everyone. It's been a while since my last post on Lena's progress and what is happening with all of us. Honestly, I was hoping that it would be a while longer before I logged on with any updates, at least any medical updates.
Tuesday was a normal day, as far as normal goes. The girls went to school, I picked them up, came home, made dinner and they got ready for their bath. While in the shower, Britt noticed that Lena's head looked a bit strange and asked me to take a look. As soon as she came out of the shower my first thoughts were... ambulance or drive to the ER? Lena had a mass, or something, the size of a tennis ball growing in the middle of her forehead. Britt stayed with Naia and Kira and got them into bed while I headed to Methodist. *Thank you Aunt Alli and Nick for coming to be with us and distract Lena! We love you the mostest!
Well, although I was a bit freaked out... or a hell of a lot freaked out... Lena didn't seem to understand what was wrong. She was not in pain and had not seen her head. It was fairly distorted and since I don't have any medical knowledge or training, I didn't know if her head was going to blow up, if her brain was swelling or if possibly the piece of her skull that had been removed had shaken loose and managed to shift. All I knew was that it did not look good. So after a quick CT scan, background information and call to our neurologist, it was determined that it was probably abroken blood vessel- basically a large knot on the head like you would get from being hit with a baseball bat. The problem was, Lena hadn't been hit, hadn't fallen that day and hadn't bumped into anything. The ER doctor admitted that it was highly unusual and strange.
So on to MD Anderson Wednesday morning for a check in with the neurologist. Same story... interesting, not normal, unusual... However, he was not so sure it was blood. There was not any discoloration under the skin and no sign of trauma. He wanted us to wait a few days and come back today, Friday, for an MRI and follow-up. He let me know that there was a strong possibility that he would need to take a sample of the fluid to find out what it was.
Now we're at today's visit. Lena had an MRI this afternoon. The amazing news is that she was not sedated and stayed still for the entire process (25-30 minutes). Dr. DeMonte couldn't believe how clear her images were and that she did such a great job. I tell you what, that girl is amazing. :) However, he learned that the fluid was neither pure spinal fluid nor pure blood. It was some kind of mixture of fluids. He told Lena he would be taking a sample. Yep! She screamed bloody murder and cried so hard I think the hospital was shaking! I held her steady as he first inserted a needle to collect the sample and then again as he inserted a needle to drain as much of the fluid as he could. All the while she is screaming, crying and begging me to take her home. Whew... you would think the girl's been through enough. Then the doctor bandaged up her head and wrapped it up similar to how she looked coming out of surgery last July, like a turban. Then Lena was crying because she has two birthday parties to attend this weekend and felt she did not look pretty. She kept telling me that everyone was going to laugh at her. She looked defeated and heartbroken. We had planned a Dollar Store visit after the appointment and she didn't even want to go there because people would see her. (So those of you who get that. Kids NEVER turn down a trip to the Dollar Store!) She walked hidden behind me all the way out of the hospital and into the car.
Although it was a tough week and a tough day, we are hanging in there now. Lena's spirits are improved and when Naia and Kira came home today, they were eager to see her and give her some love. They also had notecards from each student in their class to give her wishing her to get well soon and telling her they hope she comes back to school on Monday. I'm going to post a photo of her reading her cards when I get them uploaded. They really brightened her day and made her smile. :)
So... here we go again but I think this time, we're a little more calm, a little more prepared. We head back to MD Anderson Monday for a check on her progress. I'll write a quick update then to keep you all informed.
As always- much love to you. Hugs & Kisses- Holland, Kira, Lena and Naia
Tuesday was a normal day, as far as normal goes. The girls went to school, I picked them up, came home, made dinner and they got ready for their bath. While in the shower, Britt noticed that Lena's head looked a bit strange and asked me to take a look. As soon as she came out of the shower my first thoughts were... ambulance or drive to the ER? Lena had a mass, or something, the size of a tennis ball growing in the middle of her forehead. Britt stayed with Naia and Kira and got them into bed while I headed to Methodist. *Thank you Aunt Alli and Nick for coming to be with us and distract Lena! We love you the mostest!
Well, although I was a bit freaked out... or a hell of a lot freaked out... Lena didn't seem to understand what was wrong. She was not in pain and had not seen her head. It was fairly distorted and since I don't have any medical knowledge or training, I didn't know if her head was going to blow up, if her brain was swelling or if possibly the piece of her skull that had been removed had shaken loose and managed to shift. All I knew was that it did not look good. So after a quick CT scan, background information and call to our neurologist, it was determined that it was probably abroken blood vessel- basically a large knot on the head like you would get from being hit with a baseball bat. The problem was, Lena hadn't been hit, hadn't fallen that day and hadn't bumped into anything. The ER doctor admitted that it was highly unusual and strange.
So on to MD Anderson Wednesday morning for a check in with the neurologist. Same story... interesting, not normal, unusual... However, he was not so sure it was blood. There was not any discoloration under the skin and no sign of trauma. He wanted us to wait a few days and come back today, Friday, for an MRI and follow-up. He let me know that there was a strong possibility that he would need to take a sample of the fluid to find out what it was.
Now we're at today's visit. Lena had an MRI this afternoon. The amazing news is that she was not sedated and stayed still for the entire process (25-30 minutes). Dr. DeMonte couldn't believe how clear her images were and that she did such a great job. I tell you what, that girl is amazing. :) However, he learned that the fluid was neither pure spinal fluid nor pure blood. It was some kind of mixture of fluids. He told Lena he would be taking a sample. Yep! She screamed bloody murder and cried so hard I think the hospital was shaking! I held her steady as he first inserted a needle to collect the sample and then again as he inserted a needle to drain as much of the fluid as he could. All the while she is screaming, crying and begging me to take her home. Whew... you would think the girl's been through enough. Then the doctor bandaged up her head and wrapped it up similar to how she looked coming out of surgery last July, like a turban. Then Lena was crying because she has two birthday parties to attend this weekend and felt she did not look pretty. She kept telling me that everyone was going to laugh at her. She looked defeated and heartbroken. We had planned a Dollar Store visit after the appointment and she didn't even want to go there because people would see her. (So those of you who get that. Kids NEVER turn down a trip to the Dollar Store!) She walked hidden behind me all the way out of the hospital and into the car.
Although it was a tough week and a tough day, we are hanging in there now. Lena's spirits are improved and when Naia and Kira came home today, they were eager to see her and give her some love. They also had notecards from each student in their class to give her wishing her to get well soon and telling her they hope she comes back to school on Monday. I'm going to post a photo of her reading her cards when I get them uploaded. They really brightened her day and made her smile. :)
So... here we go again but I think this time, we're a little more calm, a little more prepared. We head back to MD Anderson Monday for a check on her progress. I'll write a quick update then to keep you all informed.
As always- much love to you. Hugs & Kisses- Holland, Kira, Lena and Naia
Friday, October 16, 2009
Good News- MRI
Hi everybody. I'm sorry it has been a while since our last posting. Things have been busy around here as usual. I was waiting to post until I had some good updates on Lena's medical progress. We finally have good news! Yeah!
Last week Lena went in for her MRI follow-up. It hasn't been quite three months since her surgery although it seems like it happened years ago. The past three months have been filled with exhaustion, anxiety, stress but most importantly, love. We have so much love in our family. Don't get me wrong, there are still many days when I hear these words, "You are the meanest Mommy in the world!" :) I'd hate to give the impression that things are always rosy around the Poulsen household. But there seems to be a shift too. It might just be in my eyes but I do feel that I appreciate my daughters more and that my heart has grown to allow all of that love in. Kira, Lena and Naia have also grown in their ability to empathize with not only one another but with all others. It is common now that when we see someone out and about with a disability, the girls are more likely to comment on how we don't talk about how people look or make fun of people that are different from us. They are still 6 years old of course but they "get it" now in a way that they didn't before. It seems as if the students in Lena's class are more understanding as well so it's all good.
Oh... the good news... I better get this out before I start randomly writing about what we've been up to, our upcoming Halloween costumes, etc.
So last week Lena had an MRI at MD Anderson. It was quite a frustrating day. We were there around 6:45 in the morning and didn't get out until around 2:00 in the afternoon. We were scheduled to go see her neurologist Friday morning but they had called a few weeks ago to reschedule. So it wasn't until this past Wednesday that we got the results.
***Her MRI was clear. What does this mean? It means that the portion of the tumor that was left following the surgery is not showing any signs of regrowing at this time. We will return in 6 months for another MRI and then continue to check on the tumor, probably for the rest of her life although she might be able to extend the periods in between the checks to one year intervals.
After months of feeling that we were in a neverending tornado, I think we can finally take a reprieve and take a deep breath. We know we are not out of the woods but we sense that we can focus on our family, the holidays and our friends without thinking every minute about our next appointment, check up or results. Lena is struggling with wearing her glasses and hates to have her "good eye" patched but these are things we are working through. Right now she is happy and doing well in school. We are good.
Lena has had to learn a lot and go through a lot in the past 3 months. When we left the doctor's office on Wednesday, we were holding hands and walking to the elevator. Lena was excited because she knew we'd ride the escalator on the way out of MD Anderson! I asked her if she knew how happy Mommy was that the tumor was not growing back right now. She smiled and then turned to ask me if there were other tumors growing in her brain. Just not the question I was expecting. I told her there were not any other tumors and that she didn't have to come back to the doctor for a while. She smiled again and then asked me about the escalator ride and if we could go up and down two times. :) Of course we did. We had a nice ride down, up, down and up again!
So, I'll restrain from going on and on about all else happening but wanted to let you know that I'll check in to write every once in a while and let you all know how Lena, Kira and Naia are doing. If you ever want to reach us, you can always email at holland_poulsen@hotmail.com. We'd love to hear from you. We love all of our friends and family very much. We hope that you enjoy the cool weather and the time spent with your family. Hugs & kisses- Holland
Last week Lena went in for her MRI follow-up. It hasn't been quite three months since her surgery although it seems like it happened years ago. The past three months have been filled with exhaustion, anxiety, stress but most importantly, love. We have so much love in our family. Don't get me wrong, there are still many days when I hear these words, "You are the meanest Mommy in the world!" :) I'd hate to give the impression that things are always rosy around the Poulsen household. But there seems to be a shift too. It might just be in my eyes but I do feel that I appreciate my daughters more and that my heart has grown to allow all of that love in. Kira, Lena and Naia have also grown in their ability to empathize with not only one another but with all others. It is common now that when we see someone out and about with a disability, the girls are more likely to comment on how we don't talk about how people look or make fun of people that are different from us. They are still 6 years old of course but they "get it" now in a way that they didn't before. It seems as if the students in Lena's class are more understanding as well so it's all good.
Oh... the good news... I better get this out before I start randomly writing about what we've been up to, our upcoming Halloween costumes, etc.
So last week Lena had an MRI at MD Anderson. It was quite a frustrating day. We were there around 6:45 in the morning and didn't get out until around 2:00 in the afternoon. We were scheduled to go see her neurologist Friday morning but they had called a few weeks ago to reschedule. So it wasn't until this past Wednesday that we got the results.
***Her MRI was clear. What does this mean? It means that the portion of the tumor that was left following the surgery is not showing any signs of regrowing at this time. We will return in 6 months for another MRI and then continue to check on the tumor, probably for the rest of her life although she might be able to extend the periods in between the checks to one year intervals.
After months of feeling that we were in a neverending tornado, I think we can finally take a reprieve and take a deep breath. We know we are not out of the woods but we sense that we can focus on our family, the holidays and our friends without thinking every minute about our next appointment, check up or results. Lena is struggling with wearing her glasses and hates to have her "good eye" patched but these are things we are working through. Right now she is happy and doing well in school. We are good.
Lena has had to learn a lot and go through a lot in the past 3 months. When we left the doctor's office on Wednesday, we were holding hands and walking to the elevator. Lena was excited because she knew we'd ride the escalator on the way out of MD Anderson! I asked her if she knew how happy Mommy was that the tumor was not growing back right now. She smiled and then turned to ask me if there were other tumors growing in her brain. Just not the question I was expecting. I told her there were not any other tumors and that she didn't have to come back to the doctor for a while. She smiled again and then asked me about the escalator ride and if we could go up and down two times. :) Of course we did. We had a nice ride down, up, down and up again!
So, I'll restrain from going on and on about all else happening but wanted to let you know that I'll check in to write every once in a while and let you all know how Lena, Kira and Naia are doing. If you ever want to reach us, you can always email at holland_poulsen@hotmail.com. We'd love to hear from you. We love all of our friends and family very much. We hope that you enjoy the cool weather and the time spent with your family. Hugs & kisses- Holland
Monday, September 21, 2009
Eye Surgery & Tears
Well, we knew today was going to have its challenges but the challenges that we faced were just not aligned with what we were expecting. After a hectic morning of getting Kira and Naia off to school, on "Picture Day" no less, we headed over to Texas Children's Hospital. Our arrival time was supposed to be 9:30 with surgery scheduled for 11:30. As usual, timing is always off so Lena's surgery didn't begin until a bit after 12:30. Because the morning was so crazy, Britt and I didn't get a chance to eat breakfast. Well, we could have but chose not to in front of Lena since she wasn't allowed to have any food or drink this morning. What we didn't realize was that we both needed to stay on the floor once we checked in and there wasn't any food or drinks allowed. It makes sense though. None of the kids scheduled for surgery could eat or drink so that'd be pretty cruel to have food and drinks all around.
However, Lena held up better than we did. She was in a great mood and spent most of her time playing and drawing pictures. We'd take turns with Mommy drawing a picture for her to color and then she would copy the picture on her own. At 6 years old, Lena has some skill! (She gets that from me!) Since I had talked to Lena about the upcoming surgery last Friday at our pre-op appointment, she was prepared and didn't have too many questions about what was happening. She was happy that she would not be "poked" while she was awake and that she got to choose a flavor for the mask that she would wear that would put her to sleep. She choose Bubble Gum flavor. :) All in all, the morning leading up to the surgery went fairly well- just long and void of food!
Lena's surgery took about an hour and a half. When Dr. Edmond came out after the procedure was finished, she let us know that the surgery was more challenging than she had expected. With the damage to Lena's eye, 3rd optical nerve and eye muscles, we weren't that surprised. I think we've heard something similar throughout this process. It seems that everything related to Lena's tumor and the outcomes have been more challenging and just not routine. Dr. Edmond does believe that the surgery was successful though and that is what matters most right now.
We went to the recovery area once they brought us back to find Lena sleeping. The nurse let us know that she had woken up briefly and was pretty agitated. They gave her some pain medication and she fell back asleep. It was hard to imagine because although Lena cried after her last surgery, she didn't seem overly agitated. Oh, what a surprise for us when she woke up again. Lena began screaming and crying. Although we were warned, it was unnerving to watch as blood flowed from her eye instead of tears. I'm sure they were tears with bood mixed in but it looked like pure blood. Britt had a moment of panic caling for the nurse but I think he just didn't hear her when she was explaining that it was to be expected. Lena did not want to be comforted and was beyond agitated. She was kicking, screaming and crying. My heart was breaking as I'm sure Britt's was but we knew that a lot of the reactions were from the anesthetic. What we weren't expecting was when Lena began crying out that her eye wouldn't open. I think the whole room heard my gasp as I realized what had happened.
Somewhere along the way, Lena must have thought that this surgery was going to "fix" her eye and allow her to open her eyelid. Up until now she has accepted so much of what has happened to her with a calm strength that is unusual for a 6 year-old. I think we finally reached the breaking point. She was so mad when I told her that this surgery was not to fix her eyelid. She screamed that I was the "meanest mommy ever." I just thought my heart had broken before. Now it was crushed. Not only had she thought that this surgery would fix everything, I couldn't tell her that it would ever be fixed. Lena kept asking when her eye would be opened, crying that it hurt and was itching, and screaming out that she wanted to go home.
For those of you that know Lena, you know she can be a "toot" at times and occasionally can be willful but overall, Lena has a calm quiet disposition. For her to be so angry and frustrated was somewhat shocking. But here's the thing, just as my moments have come when I've lost it and broken down, I think it was time for her. She has held up so amazingly and been so strong through everything she's gone through. I think that for her emotional health, it was good for her to be allowed the freedom to lose it as well. Who am I to think that she doesn't need that outlet and need to know it is okay to be upset and angry? Although it hurt to watch it happen, I'm almost relieved that it did. After a while of letting loose, Lena finally came to sit in my lap, drank a little apple juice and fell back asleep. Soon after we were released to go home. She fell asleep immediately in the car and slept the whole way home. Once in bed she slept for a few more minutes then woke up ready to watch some television.
Lena has eaten some dinner and watched some t.v. with her sisters. She's back in my bed now relaxing and getting ready for nighttime while Britt reads a book to Kira and Naia. She's good and again, hanging in there. I'll keep you all updated on her progress. She'll be home for a while recovering and then back for her post-op appointment on Friday.
Sidenote: A while back I wrote in a post about how we are adjusting to our "new normal". Here's an example of one way in which our lives have changed. On the way to school last week, Lena was singing the tune for Dr. Jean's "My Mother is a Baker". Instead of the words to the song as we know them, she was singing, "My brain it has a tumor, a tumor, a tumor, my brain it has a tumor and the doctor says, Bye-bye." Oh, what to think? Wow, my child can create her own lyrics to songs. That's damn impressive. Wow, my child is singing songs about brain tumors? That's just flat out intriguing. Maybe I should send some new lyrics to Dr. Jean for a follow-up medical album release? :)
All is good and we've made it over another hurdle. Recovery now and her follow-up MRI in about 2 weeks... We're getting there. Love you my friends, my family. Holland
However, Lena held up better than we did. She was in a great mood and spent most of her time playing and drawing pictures. We'd take turns with Mommy drawing a picture for her to color and then she would copy the picture on her own. At 6 years old, Lena has some skill! (She gets that from me!) Since I had talked to Lena about the upcoming surgery last Friday at our pre-op appointment, she was prepared and didn't have too many questions about what was happening. She was happy that she would not be "poked" while she was awake and that she got to choose a flavor for the mask that she would wear that would put her to sleep. She choose Bubble Gum flavor. :) All in all, the morning leading up to the surgery went fairly well- just long and void of food!
Lena's surgery took about an hour and a half. When Dr. Edmond came out after the procedure was finished, she let us know that the surgery was more challenging than she had expected. With the damage to Lena's eye, 3rd optical nerve and eye muscles, we weren't that surprised. I think we've heard something similar throughout this process. It seems that everything related to Lena's tumor and the outcomes have been more challenging and just not routine. Dr. Edmond does believe that the surgery was successful though and that is what matters most right now.
We went to the recovery area once they brought us back to find Lena sleeping. The nurse let us know that she had woken up briefly and was pretty agitated. They gave her some pain medication and she fell back asleep. It was hard to imagine because although Lena cried after her last surgery, she didn't seem overly agitated. Oh, what a surprise for us when she woke up again. Lena began screaming and crying. Although we were warned, it was unnerving to watch as blood flowed from her eye instead of tears. I'm sure they were tears with bood mixed in but it looked like pure blood. Britt had a moment of panic caling for the nurse but I think he just didn't hear her when she was explaining that it was to be expected. Lena did not want to be comforted and was beyond agitated. She was kicking, screaming and crying. My heart was breaking as I'm sure Britt's was but we knew that a lot of the reactions were from the anesthetic. What we weren't expecting was when Lena began crying out that her eye wouldn't open. I think the whole room heard my gasp as I realized what had happened.
Somewhere along the way, Lena must have thought that this surgery was going to "fix" her eye and allow her to open her eyelid. Up until now she has accepted so much of what has happened to her with a calm strength that is unusual for a 6 year-old. I think we finally reached the breaking point. She was so mad when I told her that this surgery was not to fix her eyelid. She screamed that I was the "meanest mommy ever." I just thought my heart had broken before. Now it was crushed. Not only had she thought that this surgery would fix everything, I couldn't tell her that it would ever be fixed. Lena kept asking when her eye would be opened, crying that it hurt and was itching, and screaming out that she wanted to go home.
For those of you that know Lena, you know she can be a "toot" at times and occasionally can be willful but overall, Lena has a calm quiet disposition. For her to be so angry and frustrated was somewhat shocking. But here's the thing, just as my moments have come when I've lost it and broken down, I think it was time for her. She has held up so amazingly and been so strong through everything she's gone through. I think that for her emotional health, it was good for her to be allowed the freedom to lose it as well. Who am I to think that she doesn't need that outlet and need to know it is okay to be upset and angry? Although it hurt to watch it happen, I'm almost relieved that it did. After a while of letting loose, Lena finally came to sit in my lap, drank a little apple juice and fell back asleep. Soon after we were released to go home. She fell asleep immediately in the car and slept the whole way home. Once in bed she slept for a few more minutes then woke up ready to watch some television.
Lena has eaten some dinner and watched some t.v. with her sisters. She's back in my bed now relaxing and getting ready for nighttime while Britt reads a book to Kira and Naia. She's good and again, hanging in there. I'll keep you all updated on her progress. She'll be home for a while recovering and then back for her post-op appointment on Friday.
Sidenote: A while back I wrote in a post about how we are adjusting to our "new normal". Here's an example of one way in which our lives have changed. On the way to school last week, Lena was singing the tune for Dr. Jean's "My Mother is a Baker". Instead of the words to the song as we know them, she was singing, "My brain it has a tumor, a tumor, a tumor, my brain it has a tumor and the doctor says, Bye-bye." Oh, what to think? Wow, my child can create her own lyrics to songs. That's damn impressive. Wow, my child is singing songs about brain tumors? That's just flat out intriguing. Maybe I should send some new lyrics to Dr. Jean for a follow-up medical album release? :)
All is good and we've made it over another hurdle. Recovery now and her follow-up MRI in about 2 weeks... We're getting there. Love you my friends, my family. Holland
Wednesday, September 16, 2009
Upcoming Surgery
Hi everyone. I know it has been a while since I've posted anything new. Much has been happening but just those day-to-day occurrences that we all experience. The girls are getting settled in first grade and we are getting back into routines to keep us sane. Over the summer I seem to have forgotten how exhausting the 45 minute car ride home with them is after a full day of work. We actually broke down and went to pick up another DS recently! Having just two seemed fine until they all three became fixated with them and then caused more problems than having none. :) Seems to be the story of our life... Let's get one and share. No, maybe we should get two since they like it. Oh hell, let's go pick up the third! I think this has been going on since we thought we could get by with just one battery operated swing. You'd think by now we'd learn our lesson but as you know, there have been just as many times that we bought three of something and 1, 2 or 3 of the items never get played with. I was sharing with a good friend a while back how one of the girls' favorite "toys" right now is a baggie full of Dixie cups. You know which ones I'm talking about? I call them "Memaw's Cups" because my grandmother always had them in her bathroom but we never did at home. I thought it was pretty cool that when we went to Memaw's house we didn't have to use our hand to scoop the water into our mouths after brushing our teeth. Anyhow. we have these for the girls to use to rinse out their mouths and one day Naia realized they'd make a pretty decent pyramid. Since then they've made castles complete with a moat and bridge, pyramids, cars, houses for Barbies, etc. If you haven't gotten a box, you should think about picking one up the next time you're at the grocery store for hours of fun for about $2!
The main reason I wanted to stop in to write tonight was because Lena's surgery is quickly approaching. She'll be going in Monday to have eye surgery. Although I'm worried about the surgery and her reactions when we talk to her about going back to the hospital, I'm really happy that the date is close. Lena has had to wear her glasses every day. That's great except that her eyes are looking in two different directions. We are encouraging her to wear them properly to hold her eyelid open but on the other hand, it has to be difficult to function, read, play or even walk when there are two of everything and it's blurry. She has to do it though or her vision will continue to deteriorate. Then, once she gets home, she spends approximately the two hours until bedtime wearing a patch on the eye that has good vision. So now we're asking her to navigate with only her weaker eye that isn't even looking straight ahead. She can barely see and she has to turn her head sideways because the eye is pointed out. Ugggg, there's just no downtime for her. But as she has proven over and over, she is a trooper. She complains a bit but we now give her a Starburst each time her patch is put on and continue to encourage her to wear the glasses when at school even though it's confusing.
The eye surgery on Monday will basically consist of severing the two of the remaining 6 muscles that control the eye movement that are healthy and then reattaching those two so that her eye is stable and looks straight ahead. This will dramatically decrease the amount of double vision she is experiencing although it won't completely correct it since it really isn't that often that your eyes are both staring straight ahead. It's got to be better than what she's got going on now though and hopefully after the surgery, she'll be more motivated to wear the glasses and keep her left eye open.
Lena should be coming home the same day as her surgery and then will need 3-4 days of recovery. I'm not really sure what she'll be able to do during the recovery period but I'm sure we'll find some fun things to do to occupy our time. Maybe it's time for another pedicure and waxing lesson? :)
Once again I'd like to just take a moment to say thank you. I know there are many of you out there who continue to pray for Lena and keep her in your thoughts. So many people stop and ask about her each day that it fills my heart. I continue to write because I've learned how much I need that venue to process my thoughts and feelings but when I'm writing I try not to think much about people actually reading. For those of you who continue to follow us on our adventure, thank you. For those of you who are silently sending us strength, thank you. For those of you who love my daughter and allow yourself to be connected to her, thank you. She is worth it. She will be the one who grows and teaches me and those around her about strength, courage and perserverence. She will be the one who shows compassion and who strives to give. Her sisters will be the ones who are the protectors for those that need it. They will be the ones who work for equality. They will be the ones who understand that it is the heart of a person that makes that person what they are, not the physical attributes. They are deserving of the thoughts and prayers being spent on them.
One other thought... for those of you who are moms, whether you have little ones at home or whether your children are entering adulthood or have been there a while, I realized something... You are the "how-to" manual. Listening to your stories, watching you with your children, observing your face when you talk about their accomplishments or their struggles, you are the ones that give the rest of us strength to forge ahead. We learn from you, each and every day. Those of you who live day in and out with children with disabilities yet show up to work with a smile on your face, those of you who had a son or daughter pass away yet you live to graciously share stories of them with us, those of you who have watched your son or daughter move to another country, those of you who let your children grow to be what they want to be instead of what you want them to be... you really are the how-to manual for those of us who are struggling or are unsure of whether we're doing a good job. (Here's my processing in action!) I learn from you. You give me strength and courage. Thank you so much from the bottom of my heart.
I'll come along next Monday or Tuesday with an update on how the surgery went to keep you posted. Much love to you my friends. :) Holland
The main reason I wanted to stop in to write tonight was because Lena's surgery is quickly approaching. She'll be going in Monday to have eye surgery. Although I'm worried about the surgery and her reactions when we talk to her about going back to the hospital, I'm really happy that the date is close. Lena has had to wear her glasses every day. That's great except that her eyes are looking in two different directions. We are encouraging her to wear them properly to hold her eyelid open but on the other hand, it has to be difficult to function, read, play or even walk when there are two of everything and it's blurry. She has to do it though or her vision will continue to deteriorate. Then, once she gets home, she spends approximately the two hours until bedtime wearing a patch on the eye that has good vision. So now we're asking her to navigate with only her weaker eye that isn't even looking straight ahead. She can barely see and she has to turn her head sideways because the eye is pointed out. Ugggg, there's just no downtime for her. But as she has proven over and over, she is a trooper. She complains a bit but we now give her a Starburst each time her patch is put on and continue to encourage her to wear the glasses when at school even though it's confusing.
The eye surgery on Monday will basically consist of severing the two of the remaining 6 muscles that control the eye movement that are healthy and then reattaching those two so that her eye is stable and looks straight ahead. This will dramatically decrease the amount of double vision she is experiencing although it won't completely correct it since it really isn't that often that your eyes are both staring straight ahead. It's got to be better than what she's got going on now though and hopefully after the surgery, she'll be more motivated to wear the glasses and keep her left eye open.
Lena should be coming home the same day as her surgery and then will need 3-4 days of recovery. I'm not really sure what she'll be able to do during the recovery period but I'm sure we'll find some fun things to do to occupy our time. Maybe it's time for another pedicure and waxing lesson? :)
Once again I'd like to just take a moment to say thank you. I know there are many of you out there who continue to pray for Lena and keep her in your thoughts. So many people stop and ask about her each day that it fills my heart. I continue to write because I've learned how much I need that venue to process my thoughts and feelings but when I'm writing I try not to think much about people actually reading. For those of you who continue to follow us on our adventure, thank you. For those of you who are silently sending us strength, thank you. For those of you who love my daughter and allow yourself to be connected to her, thank you. She is worth it. She will be the one who grows and teaches me and those around her about strength, courage and perserverence. She will be the one who shows compassion and who strives to give. Her sisters will be the ones who are the protectors for those that need it. They will be the ones who work for equality. They will be the ones who understand that it is the heart of a person that makes that person what they are, not the physical attributes. They are deserving of the thoughts and prayers being spent on them.
One other thought... for those of you who are moms, whether you have little ones at home or whether your children are entering adulthood or have been there a while, I realized something... You are the "how-to" manual. Listening to your stories, watching you with your children, observing your face when you talk about their accomplishments or their struggles, you are the ones that give the rest of us strength to forge ahead. We learn from you, each and every day. Those of you who live day in and out with children with disabilities yet show up to work with a smile on your face, those of you who had a son or daughter pass away yet you live to graciously share stories of them with us, those of you who have watched your son or daughter move to another country, those of you who let your children grow to be what they want to be instead of what you want them to be... you really are the how-to manual for those of us who are struggling or are unsure of whether we're doing a good job. (Here's my processing in action!) I learn from you. You give me strength and courage. Thank you so much from the bottom of my heart.
I'll come along next Monday or Tuesday with an update on how the surgery went to keep you posted. Much love to you my friends. :) Holland
Thursday, August 27, 2009
Medical Updates- August 25th
Hi everyone. :) It's just me here with some medical updates on how Lena is doing. Tuesday was our "Medical Center Day". Since school just started on Monday, we didn't want Lena out multiple days so scheduled all of our upcoming appointments on one day, this past Tuesday. We began the day by arriving down in the Medical Center around 8:45 at Scurlock Tower. Lena was supposed to get fitted for her new glasses that have a ptosis crutch attached. She had picked out the glasses last Friday but the crutch has to be custom fitted to her eyelid. Since surgery on the eyelid is not an option right now and if the eyelid doesn't get opened she will lose her vision, we decided to try this out. I'll post a picture tonight or this weekend of Lena in her new glasses. Christy's Optical made the crutch and attached it to Lena's new glasses. She is the youngest patient they had ever worked with for a ptosis crutch before. Of course, they adored her and treated her like a princess. Basically a ptosis crutch is a wire (like the one used with braces) that curves around and attaches to the glasses at both ends. When worn correctly, it will 'grab' Lena's eyelid, pulling it up towards her eyebrow so that she can use that eye to see.
We finished this visit around 10:35 or so and were due at the Neuro Opthalmologist at 10:45 down at Texas Children's Hospital. So we hiked out to the car and headed off. Britt dropped us at the doors so we could run up and try to make it on time. To get into this appointment on this date, we had to be squeezed in between other appointments. If we choose not to do this, we wouldn't get in until mid-September so we decided to go for it. If you're more than 15 minutes late, they cancel your appointment and ask you to reschedule. So, we really really didn't want to miss the appointment! Well, even though we made it on time, we didn't see the doctor until 12:15. Uggggggh! Dr. Edmond was surprised to see Lena with her new glasses being worn. Apparently she hadn't seen a child that young using glasses with a ptosis crutch either. Lena's vision has definitely started to deteriorate in this eye and is now at 20/50. It was 20/40 only 2 weeks ago. We talked about options and the upcoming surgery. Basics- Lena needs to wear a patch on her strong eye for about 2 hours each day to strengthen the other eye and get the brain to "turn it back on". Also, because four of the six muscles attached to her eye are damaged, the eye is deviating to the outside. This is what causes the double vision. So, Lena will have another surgery on September 21st to align her eye frontward. The remaining muscles will be attached to the wall so that her eye will no longer have mobility. It will remain fairly stationary to look straight ahead. This is the most nonevasive correction there is but if for some reason it doesn't work, there are alternative options to consider. We figure we're due some positive feedback so are planning for this to be the one to get it done. :)
One thing we found out later that evening from a phone call from Dr. Edmond was that she is scheduled to speak at a symposium for about 1500 doctors and would like to use Lena as a case study. The rarity of utilizing a ptosis crutch for a young patient like Lena makes her good doc talk! I strongly believe in educating others and helping whenever you can so I easily agreed. However, while I was reflecting later that night, I realized that if she was going to talk about Lena's case, she will probably be extra careful with my baby and do the absolute best job she can possibly do. This gave me so much comfort. I'll take everything I can in terms of making sure Lena has the best care possible and this seemed to fall into our lap. So- good news there.
We finally got out of this appointment around 1:15 and had our last appointment at MD Anderson at 2:30. However, we needed a food break. I was craving some serious caffeine too.
So, off we ran to grab some Taco Cabana to eat on our way. We were actually hoping that if we got there a little early, we might get in and out. Yeah, wishful thinking and a good lesson to us. We arrived shortly after 2:00 and were sent back to an exam room around 3:00. We met with the nurse practioner for about 30 minutes and then waited for the doctor. And waited. And waited. He finally showed up around 4:15. This doctor is a neuro-oncologist that specializes in genetic disorders/syndromes. He assessed Lena as well as both Britt and myself. After an hour, this is what we got out of the visit. (BTW- I'm sure we were told a lot more information but at that point we were brain dead and couldn't process too much more. On the other hand, Lena was full of energy and cleaning out the sink in the patient's room! I think she developed an almost unhealthy obsession with hand sanitizer on this day!)
Anyhow, basics... because Lena had a tumor grow in such a rare location for a child, there is the possibility that she has a genetic syndrome relating to chromosome 22 that might mean she would have reoccuring tumors growing in this area of her brain. On the other hand, it might be a spontaneous mutation- a one time only deal. The only way to know for sure is the genetic testing. If Lena was determined to have this deficit in chromosome 22, then both Britt and I, as well as Naia and Kira would need to be tested. Apparently the chances of another multiple (one of her sisters) having the same syndrome would be increased because of their development happening at the same time. Although we want to know, no- we need to know, whether this is something we will be facing repeatedly or if we can focus on just managing through the here-and-now, it's going to be tough. The questionnaire and other information gathering sessions about our genetics will be long and arduous. Sending Lena's samples off to a genetics lab will cost anywhere from $3000-$5000 and it isn't covered by insurance. So, I don't think it's eally optional but it also isn't our priority. We need to help Lena get through this next surgery in September and then in early October we begin the MRI testing again to assess whether the tumor is regrowing and at what rate. So, yes it's important but not as much so as some other things on our plate right now.
Okay, I think that brings you all up to date on the medical appointments from Tuesday. Now I'm going to share a little bit of heart breaking news. Lena was so much more confident going to school on Wednesday after she got her new glasses. I wouldn't say she was thrilled or excited but she was so much more ready than she was on Monday. Although she still held tightly to my hand walking in, she had her head held up high and was looking at the people around her and making eye contact. Unprompted, her sisters had told her she looked amazing in a multitude of ways on the way to school. (I was so damn proud of them!) She was just obviously more confident and ready to face the world.
At lunch that day, yesterday, Lena was sitting next to her friend from Wee Care, Kennedi. Another little girl at the table across from then turned around, pointed her finger at Lena and said, "Ugly!" I could just picture this scenario in my mind when Britt told me about it. I inhaled sharply and thought I was going to throw up. I knew it. He knew it. We knew she would get hurt. I just can't believe it happened on the day when she was finally able to hold her head back up. Lena is smart and caring. She's kind and full of heart. I know this hurt. I also know that she wouldn't do anything about it. She probably hung her head and stopped eating. However, Kennedi wasn't having any of it. Kennedi immediately got up and went to talk to the nearest cafeteria monitor/teacher. I don't know what all happened then except that the adult talked to the little girl and I hope, really hope, Lena learned a lesson. Not about how cruel people can be which I'm sure she learned very quickly, but I hope she learned that true friends give you strength. True friends love you no matter what happens to you and stand up for you. I owe Kennedi an extra special present for the next holiday!
You know we talked to Lena about what happened as we do everything but similar to Monday, we learned something else through this incident. We cannot possibly protect her at all times. The best we can do is build her confidence when we are with her, teach her and her sisters how to react and give them all the tools they will need to navigate through life. We will use the little girl's comments to teach our children how harmful it can be to talk about people who are different in any way. I know it hurt Lena. I felt like I had failed her. I know Britt did too. We are trying so hard as parents to work our way through this but nothing prepares you for it. I know I'm trying my best each day and that some of the decisions are excruciating. I really would like for someone to give me the "How-To Manual" now for raising three daughters. I hope you aren't just hiding it from me! I cry for Lena but I also smile for her. She is so loved and is such an inspiration to me and those who know her story and see her strength and resiliance. What a gift for her when she grows older when she realizes what an impact she's made on others' lives.
To end on a positive note- Lena woke up this morning and easily got ready for school. She was ready to hop right back on that wagon. Tonight after bathtime, Lena, Kira and Naia were all simultaneously singing We are the Champions while drying off and getting their hair brushed. Yes, imagine all three of them wet, naked and singing, "We are the champions my friends. And we'll keep on fighting 'til the end. We are the champions, we are the champions of the world...." Yes, they are. :)
Love you all. Thank you for keeping Lena in your thoughts and prayers and again, thank you to the Outley staff for taking care of those that are most precious to me. Hugs- Holland
We finished this visit around 10:35 or so and were due at the Neuro Opthalmologist at 10:45 down at Texas Children's Hospital. So we hiked out to the car and headed off. Britt dropped us at the doors so we could run up and try to make it on time. To get into this appointment on this date, we had to be squeezed in between other appointments. If we choose not to do this, we wouldn't get in until mid-September so we decided to go for it. If you're more than 15 minutes late, they cancel your appointment and ask you to reschedule. So, we really really didn't want to miss the appointment! Well, even though we made it on time, we didn't see the doctor until 12:15. Uggggggh! Dr. Edmond was surprised to see Lena with her new glasses being worn. Apparently she hadn't seen a child that young using glasses with a ptosis crutch either. Lena's vision has definitely started to deteriorate in this eye and is now at 20/50. It was 20/40 only 2 weeks ago. We talked about options and the upcoming surgery. Basics- Lena needs to wear a patch on her strong eye for about 2 hours each day to strengthen the other eye and get the brain to "turn it back on". Also, because four of the six muscles attached to her eye are damaged, the eye is deviating to the outside. This is what causes the double vision. So, Lena will have another surgery on September 21st to align her eye frontward. The remaining muscles will be attached to the wall so that her eye will no longer have mobility. It will remain fairly stationary to look straight ahead. This is the most nonevasive correction there is but if for some reason it doesn't work, there are alternative options to consider. We figure we're due some positive feedback so are planning for this to be the one to get it done. :)
One thing we found out later that evening from a phone call from Dr. Edmond was that she is scheduled to speak at a symposium for about 1500 doctors and would like to use Lena as a case study. The rarity of utilizing a ptosis crutch for a young patient like Lena makes her good doc talk! I strongly believe in educating others and helping whenever you can so I easily agreed. However, while I was reflecting later that night, I realized that if she was going to talk about Lena's case, she will probably be extra careful with my baby and do the absolute best job she can possibly do. This gave me so much comfort. I'll take everything I can in terms of making sure Lena has the best care possible and this seemed to fall into our lap. So- good news there.
We finally got out of this appointment around 1:15 and had our last appointment at MD Anderson at 2:30. However, we needed a food break. I was craving some serious caffeine too.
So, off we ran to grab some Taco Cabana to eat on our way. We were actually hoping that if we got there a little early, we might get in and out. Yeah, wishful thinking and a good lesson to us. We arrived shortly after 2:00 and were sent back to an exam room around 3:00. We met with the nurse practioner for about 30 minutes and then waited for the doctor. And waited. And waited. He finally showed up around 4:15. This doctor is a neuro-oncologist that specializes in genetic disorders/syndromes. He assessed Lena as well as both Britt and myself. After an hour, this is what we got out of the visit. (BTW- I'm sure we were told a lot more information but at that point we were brain dead and couldn't process too much more. On the other hand, Lena was full of energy and cleaning out the sink in the patient's room! I think she developed an almost unhealthy obsession with hand sanitizer on this day!)
Anyhow, basics... because Lena had a tumor grow in such a rare location for a child, there is the possibility that she has a genetic syndrome relating to chromosome 22 that might mean she would have reoccuring tumors growing in this area of her brain. On the other hand, it might be a spontaneous mutation- a one time only deal. The only way to know for sure is the genetic testing. If Lena was determined to have this deficit in chromosome 22, then both Britt and I, as well as Naia and Kira would need to be tested. Apparently the chances of another multiple (one of her sisters) having the same syndrome would be increased because of their development happening at the same time. Although we want to know, no- we need to know, whether this is something we will be facing repeatedly or if we can focus on just managing through the here-and-now, it's going to be tough. The questionnaire and other information gathering sessions about our genetics will be long and arduous. Sending Lena's samples off to a genetics lab will cost anywhere from $3000-$5000 and it isn't covered by insurance. So, I don't think it's eally optional but it also isn't our priority. We need to help Lena get through this next surgery in September and then in early October we begin the MRI testing again to assess whether the tumor is regrowing and at what rate. So, yes it's important but not as much so as some other things on our plate right now.
Okay, I think that brings you all up to date on the medical appointments from Tuesday. Now I'm going to share a little bit of heart breaking news. Lena was so much more confident going to school on Wednesday after she got her new glasses. I wouldn't say she was thrilled or excited but she was so much more ready than she was on Monday. Although she still held tightly to my hand walking in, she had her head held up high and was looking at the people around her and making eye contact. Unprompted, her sisters had told her she looked amazing in a multitude of ways on the way to school. (I was so damn proud of them!) She was just obviously more confident and ready to face the world.
At lunch that day, yesterday, Lena was sitting next to her friend from Wee Care, Kennedi. Another little girl at the table across from then turned around, pointed her finger at Lena and said, "Ugly!" I could just picture this scenario in my mind when Britt told me about it. I inhaled sharply and thought I was going to throw up. I knew it. He knew it. We knew she would get hurt. I just can't believe it happened on the day when she was finally able to hold her head back up. Lena is smart and caring. She's kind and full of heart. I know this hurt. I also know that she wouldn't do anything about it. She probably hung her head and stopped eating. However, Kennedi wasn't having any of it. Kennedi immediately got up and went to talk to the nearest cafeteria monitor/teacher. I don't know what all happened then except that the adult talked to the little girl and I hope, really hope, Lena learned a lesson. Not about how cruel people can be which I'm sure she learned very quickly, but I hope she learned that true friends give you strength. True friends love you no matter what happens to you and stand up for you. I owe Kennedi an extra special present for the next holiday!
You know we talked to Lena about what happened as we do everything but similar to Monday, we learned something else through this incident. We cannot possibly protect her at all times. The best we can do is build her confidence when we are with her, teach her and her sisters how to react and give them all the tools they will need to navigate through life. We will use the little girl's comments to teach our children how harmful it can be to talk about people who are different in any way. I know it hurt Lena. I felt like I had failed her. I know Britt did too. We are trying so hard as parents to work our way through this but nothing prepares you for it. I know I'm trying my best each day and that some of the decisions are excruciating. I really would like for someone to give me the "How-To Manual" now for raising three daughters. I hope you aren't just hiding it from me! I cry for Lena but I also smile for her. She is so loved and is such an inspiration to me and those who know her story and see her strength and resiliance. What a gift for her when she grows older when she realizes what an impact she's made on others' lives.
To end on a positive note- Lena woke up this morning and easily got ready for school. She was ready to hop right back on that wagon. Tonight after bathtime, Lena, Kira and Naia were all simultaneously singing We are the Champions while drying off and getting their hair brushed. Yes, imagine all three of them wet, naked and singing, "We are the champions my friends. And we'll keep on fighting 'til the end. We are the champions, we are the champions of the world...." Yes, they are. :)
Love you all. Thank you for keeping Lena in your thoughts and prayers and again, thank you to the Outley staff for taking care of those that are most precious to me. Hugs- Holland
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