This is Hannah. She was a happy, healthy and active 7 year old when she was diagnosed with a brain tumor. This is her story.
September 4, 2012
All summer has gone by since I last posted, where did the time go? Now I have to think back and rack my brain to remember just what all we did!
From the end of June through the month of July, we spent time traveling with Colby's travel lacrosse team. The team had a successful year, and lots of fun. Hannah liked traveling just to check out the pools at the different hotels.
Relaxingin the back of the car at a tourney
We had a yard sale in July, and now I remember why I haven't had one in 10 years. After weeks and weeks of preparation, we opened at 8am, and by 10am it was raining steadily. Hannah also decided to do a fundraiser for Hannah's Cans for Cancer during the yard sale. She put together a huge stash of stuffed animals, many of them brand new with tags on and asked for donations for the animals. Some of the animals were from her personal collection, some of them were donated from the previous owners of the Love Lane Sweet Shoppe, and some were donated from my parents from a Christmas donation program they run in Indiana. Hannah raised $54 for Cans for Cancer, not bad considering we were really only open for two hours.
We also participated in the Mattituck Love Lane Street Festival this year, another fundraiser for Hannah's Cans for Cancer. Hannah made over $400 selling lemonade on a very hot day in July! It was a great success and we hope to do it again next year.
Lemonade at the Street Festival
Colby Hannah and Sydney at Notre Dame
At the end of July cousin Sydney came to visit for a week, then the girls and I drove to Indiana to spend a week with Grandma and Grandpa. The girls had been looking forward to going to Indiana for a long time, and they always have a good time. I went home to attend my 30 year high school class reunion, which was a lot of fun.
Carlson's in Indiana
So, other than traveling to New Jersey, Delaware, and Pennsylvania with lacrosse, we travelled to Massachusetts to hike the high point in the state, went to two Yankee games, went to the ocean (only once unfortunately), swam in the pool, hung out with friends and relaxed! The summer seems to have just flown by.
School starts tomorrow! Colby will be in 10th grade, and Hannah in 8th. It's no surprise to us, but Hannah is struggling with starting school again. There will be many changes for Hannah this year, the biggest being a change in the aide she has assisting her. The school has decided that after the last few years with the same aide whom Hannah really adores, she is no longer able to continue with this aide. Hannah is very troubled by this, and has declared that she "is not going to school and I can't make her." She also doesn't have one of her good friends from her special education class with her this year. It seems that all of her security "blankets" have been removed and many things will be very different for her this year. It is inevitable in life, and in school, it's just hard for her.
Hannah at the Hampton Classic last week
I met with Hannah's teachers this year, just to give them an overview of her issues. I really like her special education teacher this year, and Hannah seems to like her also. I hope this will be our saving grace this year! I have taken Hannah to school a few times, we went in the visit the nurse she likes, we went over her schedule, and we went and set up her locker today. We also went in to speak to her guidance counselor about this year, to try and allay some of her fears. Hannah found out who her aide will be to help her out at the beginning of the year, getting her to where she needs to be with what she needs for class (that's one of her biggest weaknesses) and she is familiar with the person. It's still way out of her comfort zone and change is still very difficult for her. For the past week, since I told her she won't have her previous aide, she has been weepy over the smaller things. I'll be holding my breath tomorrow waiting for her to walk in the building.
On the medical front, Hannah has been doing well. The new orthotics she is wearing seem to help with her foot pain, so that's encouraging. Her endocrinologist is discouraged by her growth, Hannah is no longer on the regular growth chart. She had been hanging onto the 1th percentile, but has since fallen below the scale. Her growth hormones aren't disastrously low, they may be an issue. The doctor wants to follow her a bit more closely, so we will see him in three months. He will check her growth then and if necessary (which I'm anticipating it will be) Hannah will have a growth hormone stimulus test done. This test will determine if her body is producing the necessary amount of growth hormone. She will have to be in the hospital while having this test done, since it involves an IV, and administration of drugs which could lower her blood pressure to a dangerous level. But, more on that later, when we know whether or not she will have to have the test.
We also had a visit to her oncologist and neurologist. Hannah is still on the anti-seizure medicine to keep the eye episodes at bay. For the most part it's working, she usually doesn't have more than one per day and they are minimal when they happen. She has been having headaches, but after questioning her, the doctor didn't think they warranted moving up her MRI, which is scheduled for November, which is good. We also spoke to the oncologist about her continued morning nausea. The doctor recommended a new drug, a different agent which he thought may work well for Hannah. However, when checking on it, he discovered it is only given by IV, so that's not an option for Hannah. He did recommend an anti-nausea patch, scopolamine, to try. We immediately tried it, but Hannah woke the next morning with many adverse symptoms including dizziness, headache, general fatigue and weakness, and cognitive issues. She was having trouble holding a conversation with me. After a quick evaluation and attempting to speak with her, but having her look off into space, I took the patch off. She slowly returned to normal, but it took about 48 hours. Like the oncologist told Hannah, we may never be able to get everything to "perfect." We'll keep trying, but when things are "pretty good" sometimes we have to learn to leave them there. So we'll see the endocrinologist in November and have MRIs done at the end of November or beginning of December.
So I hope all of you have had a great summer. Thanks for continuing to follow us here, and to support Hannah. Love to all!