Picture

Here is a picture of Kylee at the McDonald House today. She is just hanging out having fun. For the most part she is handling the chemo and radiation pretty well. Looks like she is exercising :)

Week One

Week One

Week one is almost done. Kylee started both chemo and radiation on Monday. Monday didn't go too bad. She was pretty tired but that was about it. Tuesday they drew her labs and her sodium was done and she had gained a pound. They were thinking she was retaining water. So on Wednesday we had to have labs drawn again and if they were worse or if she gained anymore weight she would be put in patient. Wednesday labs looked better so we were good to go. What they think happened is that Kylee had really bad #2 diapers on Friday so I gave her pedialyte for 24 hours and slowly worked her up to her full feed. They are thinking the pedialyte has less sodium in it then her milk and that threw everything off. Tuesday she had a hard time with the anesthesia. She couldn't keep her oxygen level up so she ended up needing some oxygen. Other then that she is doing pretty well. She is only needing about 1/3 of the anesthesia then what is normal for some one of her size. She also had a skin reaction to the stickers they put over the markings for radiation. He said he has never had anyone allergic to them before I said Kylee always likes to be the first for everything. We also had a VERY difficult time trying to find a place to stay. The Ronald McDonald House was full so had to basically be homeless for a while. Then we ended up staying at a hotel the first night and a place called Kathy's House (wouldn't recommend it to anyone..would rather stay at a hotel for the price you pay) the next night and then finally got into the McDonald House. I can't thank our nurse Teresa enough for all her help down there the first few days. She did all the packing and unpacking for me while I was at the hospital with Kylee. Kylee is down there with my mom and our nurse Marsha for 2 days so I can come home and try to work. I also can not thank them enough for helping us. Our family is really pulling together for us. So we are 10% done. This is going to be a long road but trying to stay positive.

Kylee McGlin Benefit

Some of our friends and family are doing a benefit for Kylee. It is going to be on Saturday September 25th from 6:00 to 9:00 pm at Bean City Bar and Grill. It is going to be a family event with games, DJ and different raffles. They have been doing a wonderful job with setting everything up. I can not THANK them enough for everything they are doing for us. The benefit is going to be a princess theme. They are having T-shirts made up saying Kicking Cancer Princess Style and then the Kylee McGlin Benefit. So THANK YOU....Michelle, Kristi, Kelly and Jill for all your help with this along with everyone else who has donated raffle items so far. This really means a lot to us.

Family Pictures

Here is a video that the lady that took our family pictures made for us. It is so nice. It was hard work get everyone to sit still to take pictures but well worth it. There is music to it so be sure to have your volume on and get your tissues ready.
Our wonderful friend Ashley had the idea of getting Kylee's picture taken with gold balloons as that is the color for childhoold cancer. On Sunday night as a family were are going to let the balloons go. This is going to be our send off of our journey with cancer.

http://video214.com/play/8h9z6MOIg7UVuWr4dVJPOQ/s/dark

Happy Girl

Just had to post of a picture that our nurse sent us of our happy little girl. They were sitting outside soaking up some sun and having a girly day :)

Decision Made

Decision Made

Well today we give our ok to go ahead with radiation and chemo and the process should start next Monday. Six weeks of daily radiation Monday thru Friday. It will be a long process. Each day we will have to get up early and go to day surgery and hour before radiation. They then will put Kylee to sleep transfer her over to the hospital that does the radiation (Children's Hospital in Milwaukee does not do it but a hospital connected to Children's does). The radiation will take about 20 minutes and then she will go to recovery and once she eats she can go back to the Ronald McDonald House (we are 2 hours from Milwaukee). Then we will start the process all over again the next day. We are hoping to break up the 6 weeks between me and my parents and nurses as for one I don't have 6 weeks to take off of work until the first of the year and I have already used much of my FMLA and we have a long road ahead of us before the first of the year. Plus it will get to me a long road being down there. It is so nice to have such wonderful parents, nurses and a husband who will stay home and work and take care of the 2 boys. We have to go down some time this week to get her "prepared" for the radiation. My mind has not even moved on to chemo but I guess that is where the Dr's are more concerned about Kylee. She has so many other health issues that they are not sure how she will handle the chemo. As always one step at a time....lets get thru the radiation and then move on to chemo.

New Equipment

Before Kylee got sick we had ordered her some new equipment. Well it is in and she is finally well enough to be using it and I love them. We got her a new chair called a Nandu. It is so nice. It helps her to work on her upper body as it only supports her lower back. You can also adjust the height of it so she can sit at a little table. Then we got a tumbleform wedge that you strap her into and she has to work on staying on her tummy and pushing up with her arms. Last of all our good friend Ashley Murphy sent us a sitting device called a sit u up and it is shaped like a "c" and also helps her work on her sitting. Could you tell that sitting was a goal for the age of 4? I guess I can cut her a slack with everything that has been going on :)

Pictures

We got our family pictures taken yesterday. Can you believe that we haven't had a family picture taken in 4 years? Yes...that means no family picture with Kylee or Keegan and after yesterday I remember why that is. It was hard work. Keegan just wanted to run. If the lady said sit he would stand if she said stand he would sit. Plus it was so hot. I am hoping for at least one good family picture and 1 good picture of Kylee and then I told Jason we are not doing it again until Collin gets married.

Happy Girl

To end on a good note. Princess Kylee has been such a happy girl. She just smiles and laughs and we are really enjoying every minute with her. Everytime I see her smile it makes me want to cry because that is all I want....I just want her to be happy and enjoying her life.

Big Decision

Big Decision

We have one of the biggest decisions to make and that is how to go about treating Kylee's cancer. Typical treatment is radiation to the entire head and spine. With Kylee being so delayed we are a little worried about doing that and so were several of the Dr's. Then we saw a psychologist who saw Kylee for about 10 minutes never once awake during those 10 minutes and asked me about 20 questions if I was lucky. Based on that he decided that Kylee was done developing and that we should go ahead with the full head and spine radiation. I said I completely disagree. Do you know anything about 1P36. Do you know that many of these children learn to do lots of things other kids do but at a much slower rate. So you want to tell me at the age of 3 she is done. REALLY are you SERIOUS. Well needless to say he doesn't want to see us again. Can't imagine why...maybe because I would show up with lots of data to show that my daughter isn't done. Show him how much progress she made in school in just a few months with a tumor growing in her head. So with that being said Jason and I just don't feel right about doing the full head and spine radiation. We feel like she has lots of progression in her and just don't want to take that chance. Unless they would give me some guarantee on Wednesday I don't think they will be changing our minds.

Appointments

Wednesday we head back down to see the genetic dr and to meet with oncology one more time. After that I think we have to make our decision and start. They said they would like to start the process at least 1 month from the surgery date and that will be on Monday. So not much time.

Thank you

We continue to receive so much support both emotional, financially and physically. We could never be able to thank everyone enough for everything you have done for us. This is a very difficult time for our family but we will get thru it one step at a time.

Kylee is going to kick cancer princess style.....she is going to kick cancers butt and she is going to look good doing it :)

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.