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