Sunday, December 19, 2010

I changed the picture on the blog tonight to Hannah preparing the stockings for Jackie's Pay It Forward stocking drive. Of course she had fun buying everything and stuffing the stockings.

Things are in overdrive now. My sister and niece arrive Tuesday, my parents on Thursday. We are hoping they bring some of that Midwest snow with them.

Hannah and I have been busy baking cookies, she would bake every day if she could. I have been in contact with her oncologist regarding her symptoms following her short dose of steroids. She has continued to regress. She still has daily headaches, she isn't eating again in the mornings and has been complaining that her stomach hurts especially in the mornings. Ugh, poor thing. I feel so badly for her, it must really stink to feel bad EVERY day. She has been making it to school though, so she isn't falling behind. The other night as I was putting her to bed she was crying and told me her life was the "worst ever." I thought-here it comes-this whole cancer thing has finally gotten to her and this is it. But, what she said to me was "I hate going to school." She said she wants to be home schooled, and doesn't care if she misses out on seeing her friends at school, and some of the fun things. I think school is much harder for her than any of us can even imagine. We get a little taste of it helping her with homework. She works very hard to keep up, and maybe that's part of her headaches???? Enough hypothesizing for now!

It's almost Christmas and I feel blessed to be able to share it with all of my family here with us this year. This includes all of our extended family...all of you! May you all have a very Merry Christmas and a Happy and healthy New Year. Please keep all of our cancer family in your thoughts and prayers, there are so many spending this holiday in the hospital or in heaven.

♥Kim

Monday, December 6, 2010

Where has the time gone? We did get the last second opinions in regarding the MRI. Three out of four doctors agreed these spots were "treatment changes." When I asked specifically what that meant, the answer was "we don't know, but we see these often in kids treated with both radiation and chemotherapy." We don't know. I appreciated the honesty coming from one of the top radiation oncologists in the country and the head of the Harvard Medical School. Hannah's oncologist said he wouldn't be surprised if these spots grew on her next MRI (deep breath at this one) and that he wouldn't be too concerned with that. What we would be concerned with would be changes to the spots themselves in density, consistency, enhancement, nodularity, etc. I asked for repeat scans in 2 months, doctor said 3, so we are scanning at 2 and a half months, late January.

Hannah went off steroids after one week. Her eating is tapering down now, wow, those steroids cause crazy eating frenzies! Clinically, Hannah didn't present show any improvements while on the steroids. However afterwards, beginning soon after she stopped taking them, her headaches and stomach aches seemed to get better. She started eating breakfast again. Note that she wasn't in school during that time. Hmm. The doctor said one possibility could be that the steroids decreased any inflammation in the brain, decreasing her symptoms. We are keeping an eye on her over the next 2-3 weeks to see if her symptoms reappear. She has had daily headaches after returning to school after Thanksgiving break, but not bad enough to go to the nurse or come home from school.

She has asked a few questions about all this. I'm sure she hears me on the phone talking to the doctors, when they call I have to talk to them right then and there. She was working on a project for school, an "I am poem." One of the statements was "I am afraid of" and Hannah filled in..."that my cancer will come back." (another deep breath at this one) She is just so matter of fact about the whole thing sometimes. She doesn't talk about it or cry about it or even mention it. But, when she writes something like this, I know she thinks about it.

We're preparing for Christmas like all of you. This year, Hannah decided she would like to support her friend and fellow cancer survivor Jackie in her Holiday Stocking Drive. Please visit her site HERE to see what an amazing job this little girl does with all of her marrow drives and pay-it-forward events. She is a certainly wise beyond her years...awesome! It's not too late to get involved with us in Jackie's stocking drive. If you would like to donate any stockings, please email me or call and let me know and I will come and pick them up and deliver them for you. Jackie needs all stockings by December 15th.

We have to go for a blood draw early tomorrow morning for Hannah's endocrinologist, not such a pleasant way to start your day. Hannah already told me "I'm not going" so we'll see.


♥Kim