Kallan started her medication in June and has been doing really well on it so far. Although blood tests say her immune system is low, which is the main side effect of this drug so it is to be expected. She has been pretty fortunate with not getting much sickness this winter season. Just a couple of colds. I believe 100% that is do to the fact that we are all under such great chiropractic care. That and she takes lot's of supplements to boost her immune system.
We did have one other awful side effect over Thanksgiving. The second most common one is mouth sores and she had not had a single one until November and she got 8 at one time and two teeth coming in at the same time. It was awful!!! She was inconsolable and could not eat or drink a thing for 3 days. I have never seen a kid in so much pain. It broke my heart. I had to sleep on the floor in her room and calm her down every 15 minutes because she couldn't sleep. But, the good news is she got over it and probably does not even remember it. I do though!!! And she has only had one since November.
We have had two MRI's since the last time I blogged. The first one was in September and we tried to do it in Atlanta to make it easier, but it turned out to be a disaster. Children's Healthcare of Atlanta is so unorganized compared to Cincinnati Children's and then we had to wait over to get results - and they were bad......according to Atlanta's reading of the MRI her tumor had grown. We thought we were going to have to do brain surgery. So, I went and picked up a copy of the MRI and sent it to her doctor in Cincinnati and two weeks later we got great news!!! Her tumor had not grown...it had shrunk!! Atlanta was wrong! Thank God!!! We were beyond relieved to say the least. They also said her blood work looked good. They wanted us to come to Cincinnati in December.
So, the only time we could get in for the MRI and then into see Dr. Franz the next day was December 21st and 22nd, which totally stunk!!! I was so worried we were going to get bad news right before Christmas and ruin it. We were so fortunate to have great friends give us buddy passes to fly there so we did not have to drive. It got us there early though, so as we always do we tried to make the best of our trip. We took Kallan to the Cincinnati zoo and went out to eat at our favorite restaurant downtown. It was fun!
Kallan's MRI did not go so well this time though. She has been doing sedation instead of anesthesia because it was working so well for us, but this time she woke up too early and was rip roaring angry for about 2 hours. It took 4 nurses and me to hold her down. She was kicking and screaming and hitting. So not like my sweet Kallan. I was looking at the nurses wondering what they had done to my baby. They said it happens all the time and next time she can't do sedation. Finally they just sent us home with her still screaming. It was kind of scary!!! I didn't know what we were going to do with her! We just drove her around and fed her handfuls of M&M's my mom had given to her before we left. It calmed her down so we could get her to the hotel and down for a nap. She was still so wobbly and dazed when she woke up! She could not even walk on her own.
The next day we met with her doctor and we were both so nervous he was going to drop a bomb on us. But, he didn't!!! He came in and immediately said her tumor had shrunk and she looked great! I was so glad he did not drag it out! He also told us we were lucky we decided to go ahead and put her on the medication instead of waiting because it turns out after comparing this MRI with the one we had last March she had the beginning stages of hydrocephalus and we did know know it . They could not tell without comparing the MRI's. The tumor was putting pressure on her brain and her ventricles had grown to compensate. That scared the crap out of me because I had very strongly considered waiting to have her start the medication and just have more MRI's to see how fast the tumor was growing. I cannot even imagine how bad the outcome could have been if we had done that! We owe my decision to the power of prayer. One night, in the middle of the night, while praying so hard for a sign we were doing the right thing by putting her on the medication I opened my eyes I could not believe what I saw. The moon was situated in a place where it shown in my window perfectly to where the it lit up a cross in the window. It's hard to explain, but it was there and it was my sign and I knew it. From the minute I opened my eyes and saw it I never looked back or even once second guessed our decision to put her on the medicine. And thank God we did it! We still get freaked out when we think about the what if's. But, her doctors were so pleased with how well she is doing and blown away by how well she was talking. They think it is a great sign she has not had any more seizures. They think they chances of her struggling with them are low. They think she is going to have a great life and that maybe in the next 10 years they will have a new medication for her tumors that is not an immunosuppressant. They also think she will be able to have her own babies one day with invitro!!
The entire appointment was great! It could not have been any better. They said everything we wanted to here. We were so so so happy and it totally put us in the Christmas spirit! We came back and got ready and had the best Christmas ever!! Both girls had so much fun and got some great presents of course.
Now we are just enjoying our girls. They are so much fun. Kallan is so sweet and so loving......and so feisty and stubborn too!!! She wants to do everything herself and you never tell her she can't do something! She has more determination than any kid I have ever met! I love it...most of the time. She hates the word "no" and will remember forever if you tell her "no". She loves her sister and copies everything she does and Kensley loves her right back. They are so sweet to each other.......most of the time. :) Kallan loves her Papa. She is Papa's "buddy" and Loves to play with him. He does not mind all the love either. She also loves dogs and horses! She is my animal lover like me.
We are looking forward to a fun spring and summer ahead. We just got her big annual fundraising event on the calendar for May 5th. It is going to be so much fun this year!! It will be a wine tasting in Cuscowilla. More details to follow!
