January 30, 2013

January 30th is here again. Today marks the 6 year anniversary of Hannah's diagnosis. It's hard to believe that it has been 6 years since Hannah was diagnosed. In some ways it seems like another lifetime. But there are the daily reminders of her continued struggles and challenges from the cancer that bring the past back from memory. I thought it was interesting that Hannah wrote an essay for school last week about one of her life experiences, explaining her life with cancer. Here is her essay:

Hannah Prokop                                                                                                             January 17, 2013


            When I was 7, I started having serious headaches and stomachaches. Every day I would wake up and throw up. It was very hard to go through this every day, the same thing. My mom and my dad were very worried it might be something very serious. My parents took me to many different doctors and no one could tell me what was wrong.  

One day we decided to go to the hospital and find out what was going on. When we got there we went to the ER. We had to wait a while to see a doctor. I didn’t know what was going to happen next. When I finally went in a room the nurse told my mom that they had to take blood. I was very scared I knew I didn’t like ivs. After they put the iv in I was crying. Then we had to wait for the doctor. The doctor came in, he examined me and he said he will bring in the surgeon. When the surgeon came in he examined me too, then he asked my mom some questions about my health, what has been happening, and what my symptoms were.

            After the doctor talked to me and my mom he pulled up my recent x-rays of my brain. He looked at it for a while, my mom and I were so tense and scared. Then, he told us that I had a brain tumor. I had medulloblastoma. We both started to cry. He started to explain to us what that was and what was going to happen. He told us that I was going to have to go through several years of chemotherapy.

             I had to go to lots of different hospitals with different machines to help me. It was very hard for me because some of the doctors couldn’t figure out what was wrong at some times. I would just keep going through the same routine every day with lots of stress. Some days were better than others. I would go to therapy every day and I would love to ride my bike around. I would even get to ride it all around the hospital. I would ride it around the Saint Charles hospital, go to get my favorite cookies in the cafeteria, and my favorite thing was to go down on the first floor where my mom from my room could see me on the security camera. I had to go through lots of difficult times having cancer.
             In my journey to fight cancer I went through lots of challenges. I successfully overcame my challenges and I am now living a happy healthy life. I could have never overcome cancer if I didn’t have all the help I had pushing me to keep trying. I know everyone is so proud of me.              

 I thought it was pretty interesting to hear her perspective about her diagnosis. She is right though, we are all very proud of her. 

           I haven't posted in a very long time, things just get away from me, we get busy with school and other projects and before you know it, months have passed! Since I last updated in October, we've been busy busy. Hannah's Cans for Cancer sponsored another Halloween for Cohen Children's Hospital. This year we delivered over 100 pumpkins for decorating and over 400 goodie bags that we put together. It's one of Hannah's favorite times of year, she loves to shop for all the things she thinks the kids will like playing with.

Hannah's Cans for Cancer also had another magazine drive for the hospital. We started this last year, and the hospital really liked getting all the magazines for the kids and parents. They were so appreciative that we were continuing it this year also!
Bone marrow unit gifts

In December, we sponsored a family for Christmas. Again, another shopping experience for Miss Hannah that she loved! Every day in December she came to me with suggestions of things to get for the kids. As I'm writing this now, she's online looking at earrings for herself...and she doesn't even have pierced ears...haha!!

We made over 400 goodie bags
Hannah has been doing well. School has become a good routine now for her. She made honor roll the first quarter, and only missed high honor roll by 1/2 of a point! I know she feels so good about that, and we're very proud of her. As the year progresses, things are getting a bit more difficult, but her teachers are continuing to work to modify things and help her through her IEP. She works so hard every night, and while school is not something she enjoys because it's so hard for her, she's hanging in there.

We spent the holidays here in New York and the family traveled to be there with us, which was nice. The girls always have a great time when we're all together and we did things like our annual Pictionary game, movie popcorn night and way too much good food!

Hannah had her annual MRI's a few weeks ago, and we were relieved to get the ALL CLEAR again! It was a long one this time, made even longer when the machine went down in the middle. They wouldn't let Hannah get up or move at all, so it was a very long ordeal for her and she was not happy. She did great though, and collected on all of her "MRI deals" she made with all of us!

Hannah had an endocrine appointment in November. She is no longer on the regular growth chart, just barely off now. We spoke at length with the doctor about what to do now. Hannah is bothered by her height, and has asked me several times about growth hormone to help her grow. I know many cancer kids who are on growth hormone without any problems and are doing well. However, I just will never get out of my head our neurosurgeon's comment when he reviewed a suspicious scan with me. He told me that he had three medullo kids that were all doing well, no evidence of disease, that started growth hormone. All of them relapsed, two of them died. He said that in med school they used to give growth hormone to to tumors so that they would grow. He said "don't do it." I know that's his opinion, and many other doctors think it's fine for some kids, but I just can't get past that.

In order to even begin to give her growth hormone, she would have to be admitted to the hospital for a growth hormone stimulus test, to see if her body is producing growth hormone. She would then only be treated if she was deficient. We decided we weren't going to do the test, because if it did come back deficient, we wouldn't treat her anyway. She is not that far off the charts, and is still growing and hasn't reached puberty yet. Hannah did speak up and ask the doctor with tears in her eyes and her little shaky voice about the whole thing. She said she didn't like being short. So, he told her that they were daily shots....and you should have seen the look on her face! She asked if she could have a pill instead. There is no pill, they are injection only. She isn't asking me about it anymore.

Hannah has clinic again in March. She is still having those strange eye episodes, and is still on the anti-seizure medication, so will review that again. As well, she is still on the anti-nausea medication. Not sure if that one will ever go away. Each morning, she still complains if not feeling well and still doesn't eat anything. Ugh.

Thanks for keeping up with us. It's been 6 long years, what a ride!
Looking Good!