It was a very long 8 hour drive there. Kallan does not like to be held down, so being in her car seat for that long really annoyed her. Once we got there we let her play a while before making her go to bed. We had to get up at 5:30 the next morning and knew it was going to be a very long day for us and for Kallan. Kallan did not sleep well at all and then at around 5 AM I woke up throwing up. I could not believe it. Of all the days to be sick! So, Ben had to take her to her EEG and MRI by himself. He was so nervous because he knew she would be so fussy from not eating and she always wants her Mama. So, being hungry and not having me there was not a good combination. He did great though.
I was sick for a few hours and luckily it went away by around 9:30. So, I hopped in a cab and went to the hospital. I got there and waited a while before Ben came out. They had just sedated her and he was very emotional. It is kind of scary to watch and he had not had to be there for the sedation before. I assured him she would be fine and we went to get some lunch while we waited. They came to get us when it was over and I got to get see her for her recovery. She was SO happy to see me! She hugged me, laid her head on my shoulder and gave me lot's of love. It melted my heart. The nurses had all fallen in love with her because she was so sweet. They said most kids wake up from sedation crying and very cranky. Not Kallan though! She woke up smiling and playful. They could not believe it.
The rest of the day she was very fussy though. In hindsight we think she was starving. They told us to feed her a light meal and let her rest. So, we gave her some of her favorite snacks and went back to the hotel room. She screamed the whole time. We thought we were going to get kicked out of the hotel. Finally, she took about an hour long nap and Ben and I enjoyed the brief quiet time.
Then we went to dinner where they were having a protest right outside the restaurant. As soon as we sat down at our table Kallan started screaming so loud. Ben grabbed her and ran outside. He said she was screaming so loud the protest actually stopped for a minute and everybody turned around to look at Kallan. Ben was mortified! The manager came over to me and asked me if she had gotten hurt. I told her no she is just starving and explained that she had an MRI earlier that day. The lady was so incredibly sweet. She grabbed some bread and met Ben and me outside. We gave Kallan some bread and got her calmed down. Once she got some food in her she was her normal self again. Thank God! We were both so on edge from being anxious about the results and from her crying all day. She had worn us down! They got Kallan's food out right away and then when our food came she took Kallan and showed her the horses outside while we ate. It was so nice of her and such a relief for Ben and me. We were so thankful for that lady. She was wonderful!!!
That night we got some good sleep and woke up hoping for the best. When we got there and the main nurse came in she told us right away that her SEGA had grown a little, but did not know any details. My heart just sank. I had not really even considered that fact that it had grown. I knew that at some point it probably would, but I just never thought it would come so soon. I was shocked and heart broken. Finally, the doctor came in and confirmed what the nurse said. He said at this point it was not affecting her, but within 6 months to a year it would be putting pressure on the ventricles, which would cause hydrocephalus (water on the brain) and would kill her. Hearing these words coming out of the doctors mouth was terrifying. He told us our only options are major brain resection brain surgery, or the new medication that just got approved by the FDA in October that not only shrinks the SEGA, but all also the tiny tubers that cause the seizures. This is the medication we have been doing the fundraising for because we knew we may need it one day. He highly recommended we avoid brain surgery if we can and thought we should start the medication right away so the tumor would not continue to grow any more. Of course, we were concerned about the side effects, but were pleased to hear they are fairly minimal. The worst side effect is that it lowers their immune system making them more prone to infection. But, it does not alter personality in any way and actually helps cognitively. So, it looks like I am going to be even more of a germaphobe than I already am! Scary! One other good thing about the drug is that not only does it shrink the large tumor, it shrinks all the small ones that cause seizures too. That is a major plus in our mind.
He also told us that the EEG showed a few irregular brain waves, which is from the tuberss. He did not give us much information on what they means though. He thought it looked "pretty good" overall, so I guess that it good. I wish I had been able to ask more questions about that. Only time will tell I guess. He thought her seizure was from the virus, which we learned is common. He could not tell us if he thought she would have another or not. Most likely yes, but not uncontrollable. Ugh. So, that means continued Chiropractic visits for Kallan (because I believe they are working) and continued non-stop anxiety for me.
As of now Ben and I are 95% on board to do the medication even though it is going to be very expensive. But, to save our daughters life we would do anything. The name of the medication is Affinitor. It is the new wonder drug that they think may be the cure for Cancer, Parkinsons, Alzhimers and Autism. Pretty amazing! The statistics on the success of the drug are incredible. I will try to post some articles about it and a video that was on Good Morning America. They are on my Facebook page as well. Brain surgery scares us. The tumor is in the middle of her brain, so they would have to go through a lot of good brain matter to get to the bad. It is very risky. If for some reason the medication does not work - that would be our only option though. We are optimistic it will work.
Ben and I are doing pretty well. We are obviously very sad about the news and wish it were better. But, this is the hand we have been dealt and we plan to deal with it by attacking it head on. Kallan is still going to have a great life and be a normal happy kid. We believe that with all of our hearts. She is a fighter! Try changing her diaper sometime and you will realize that real quick!!! A lot of people have to take a medication to make their body work properly. Overall, we are staying strong. We love our babies more than anything. There is nothing we won't do for them.
So, now obviously research for the medication is even more important to us and it is the TSC Walk for the Cure time again, so we are about to be begging everyone to please donate to our cause again. It is on May 14th in Roswell this year. It was so much fun last year. We would LOVE for you to come walk with us. Our walk website this year is www.firstgiving.com/fundraiser/kallan/step-forward-to-cure-tsc-roswell-ga
If you feel called to donate we thank you. If you cannot, we totally understand, but would ask you to share our link and help us raise awareness. I will be posting on FB this week.
We are also having a wine tasting at Classic Wines on Friday April 15th at 5:00. Everyone is invited. It should be a lot of fun!
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