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