We Are Home

We are home from the hospital. Kylee came home on Tuesday. What a couple of weeks it has been. As most of you already know Kylee had been suffering with headaches and throwing up issues for weeks. We had thought she had something called CVS until she was still throwing up and having headaches. We had a CT scan down in Neenah a few weeks ago and the Dr called me and said they had found something. I should of known when the Dr called that it was not good. They said she had a tumor along with some fluid build up and that we had to get to Milwaukee as soon as possible. When we got down there they couldn't get over how well she was doing considering the size of the tumor and where it was located and the fluid build up. The next day they did a MRI and said yes she has a tumor we think it is Medulloblastoma as the tumor was not there on her last MRI 8 months ago so it is considered to be a fast growing tumor. He gave us all our option (biopsy or removing or doing nothing). It was a difficult decision but we decided to have it removed. So a few days later she went thru a 6 hour brain surgery to have the tumor removed. That was the longest day of my life. They would call me every 2 hours to update me on how she was doing. They had a hard time getting all the lines in her (imagine that...Kylee...a hard poke), she lost blood so she had to have a blood transfusion and they had a few issues with her blood pressure. Other then that she did very well. The Dr came out and said there was a perfect barrier between Kylee's brainstem and the tumor so she was able to get all of the tumor and not damage the brain stem (that was a relieve) however it does appear to be Medulloblastoma. So we got good and bad news. After we went in to see Kylee she looked great. She still had all her hair but the little spot that they had to go in and remove the tumor and no bandages and just a little facial swelling. We were so happy at how great she looked. Well over the next 24 hours Kylee did not wake up. They did another CT scan and seen she had lots of fluid build up and she would need an external shunt place. They didn't have any OR rooms open so they did it right in ICU in her room. As soon as they place it she woke up and the next day we were out of ICU. We now have the task ahead of us as to what to do about treating the cancer. They figure they got all or most of the tumor but if we don't do chemo and radiation it will grow back. Due to Kylee having special needs if she were to have radiation to her entire head and spine she may loose most or all of her skills and would probably not gain them back. We have decided that is not an option for us. So our other options are to do just radiation to the site and chemo or just chemo. This lowers her odds from 80% to 50-60% to become cancer free. We go down to Milwaukee next week to meet with a team of Dr's to talk more about our options and what we would like to do.

Thank You

We would like to say THANK YOU to everyone for all the kind words, prayers, physical and financial support. The out pouring of support has been so wonderful and we would never be able to thank everyone enough for everything every one has done for us. I would like to say a special thank you to Jill (Lowney) Maus for setting up a savings account for Kylee at Community First for donations and for letting me know about the Community Tree (a non-for profit organization that helps families). I can not thank you enough for that.