Tuesday, August 31, 2010

September: Pediatric Cancer Awareness Month

Pediatric Cancer Awareness Month..Our Journey With Cancer


September is pediatric cancer awareness month so I thought I would take this time to look back on our journey with cancer. I will always look back at June 14, 2010 as the day our lives were turned upside down. Kylee had been suffering for several weeks with what we thought were migraine headaches. As a mother I knew deep down something was wrong and so I called Dr's and nurses and made trips to the ER everyday for 3 weeks. Three weeks may not seem like a very long time but when you are watching your child suffer every day three weeks seems like a life time. On June 14th we took Kylee in for a CT scan. I left there feeling like everything was fine and that they would be calling me soon to say they found nothing and would begin treating Kylee for migraine headaches. Instead the Dr called me...wait the Dr...yes...I should have known right then and there something was really wrong. The Dr never calls. Then the words came out..Karen..we found something on Kylee's CT scan. We believe it is a tumor and we need to get you to Milwaukee to Children's Hospital as soon as possible. My heart dropped. She is not suppose to have a tumor...she has migraine headaches...NOT a tumor. A million thoughts and emotions went thru my head. How am I going to tell my husband...how am I going to tell my kids...why Kylee...what else can happen to this poor little girl. I wasn't sure if I should cry, be angry, be strong or to throw up. I got myself together and started packing and off to Milwaukee we headed. The next day was full of tests and the day seemed to last forever. Then cancer came into our lives with out an invitation. There was no going back. We now had huge hurdles to cross. We had to make decisions about our daughters life and our life that we never thought we would have to make. We had to decide what a quality of life was for Kylee and our family. We had to decide if we would have surgery to remove the tumor and do chemo and radiation or if we would do nothing and let cancer run its course. Those were the hardest days of my life. I don't know how I got thru them but I did and we are now on week 6 of radiation. It has been a raging river that we are crossing but we are taking one pebble at a time...a mountain to climb one step at a time...one day at a time...one second at a time....Kylee steps. Whatever it takes us to get thru this.

A gold ribbon has been the symbol of childhood cancer since 1970. Please post this gold ribbon on your facebook page or blog page to show your support during September for pediatric cancer.

Most people would not guess by looking at me that my middle child is amongst the one in 330 that will develop cancer by the age of 19. My oldest will start school this fall and1 in 46 kids in the United States will be diagnosed with cancer every school day. I may work as a claims adjuster for a medical insurance company but my house looks like a hospital and I play the roll of nurse on a daily basis.

Our journey with cancer has just begun but I am grateful that we are still a family of five and enjoy each day I have with Kylee. Our life is full of of daily trips to the hospital, radiation, chemo, bald head and lots of emotions but I still have my Kylee and that is all that matters.
This is and will be a very difficult journey however the love and support from our friends, family and strangers provides us with not only strength and financial support but the ability to feel happiness and enjoy laughter in one of our darkest moments. We could never thank everyone enough for everything you have done for us.

Saturday, August 28, 2010

Week 5

Week 5 has not been going to well. Kylee ended up in the hospital late on Tuesday night. Kylee was in Milwaukee with my mom and nurse Teresa. I got a call at 10:45 pm (I was sound asleep and couldn't figure out how to answer the phone) saying Kylee was at the ER and they needed my permission to treat her. So of course I couldn't dial my mom fast enough to find out what was wrong. She was running a temp of 101. They did labs and her WBC was very low and her ANC level and platelets were also low. As well as having a very irritated head from the radiation (it was very red and felt like it was on fire) and a bad diaper rash. So she went in patient had a transfusion and some shots for her WBC and a million blood test and found no reason for her fever. So on Saturday they told us we could leave but we had to stay at the Ronald McDonald House so we could bring her back if anything would change. They also said to try and keep her out of the ER as much as possible as it is full of germs. They said they would rather we call them and go to the oncology clinic or right to the HOT (cancer unit) then to go to the ER. We got a extended stay room at the McDonald House which is nicer. It has more room. Collin also came down for a few days and we took him to the Milwaukee Zoo. He really enjoyed it. School is starting next week for him. First day of Kindergarten for him. Kylee will be missing her first week of school but we are hoping she will be there for the next week. We are hoping to do dual services for her (both school and homebound) so if she is to sick to go to school she would still receive therapy at home. I have to talk with the school and we will have to have a IEP to discuss it.
Other then that nothing new to report. We were suppose to be done next week but because she was sick we will be adding on after Labor day to finish her radiation up. Then we will get a 4 week break before starting chemo. The talk is that they don't feel she will be able to handle chemo but Kylee always likes to surprise the medical field so I hope she proves everyone wrong.
A few weeks ago I joined a support group in Appleton for people with children with special needs. I really enjoyed my time with them. They meet the 2nd Monday of the month and they meet for drinks first (that is my kind of group). I knew 3 moms that were there but met many more and learned so much from them. It is nice to be around other people that know what your life it like. Everyone gets cancer because everyone knows someone who has had it but not everyone understand what life it like with a disabled child.

**You never know how strong you are until being strong is the only choice you have**

Saturday, August 21, 2010

Week 3 and 4

Wow...2 weeks have gone by and I have updated. That is because they have been a busy few weeks. For the most part Kylee is doing really well. She continues to have low levels for her WBC and her blood as well as dehydration issues so we have been getting blood transfusion and IV fluid. She has also lost her hair. This was really hard for me. I knew it was coming but no matter how much you prepare yourself for it you are never truly prepared. It was falling out in large clumps and was getting all over her face and mouth so we decided to go ahead and shave it. It was difficult to do but was for the best. On a positive note about that.....We have some really great friends....Ashley Murphy and her family made Kylee so adorable scarfs. They are all decked out with flowers and bows and are so cute. I have also had several people offer to make hats and headbands for her. Everyone has been so wonderful about helping me get thru Kylee loosing her hair and helping her look like the princess she is. Kylee also has been running a fever of 101 for a few days last week so they had to watch her closely with that as she has no immune system and a fever of 101 is grounds for hospitalization but she seems to have gotten over that all on her own. Her heart as has been checked out and things look good there. Nothing has changed in the last 6 months on that so that was very good news. I think that has basically been our last 2 weeks. Only 2 weeks left of the 6 weeks radiation. It is all a blur and will be happy when it is over :)
Thank you everyone for all the support you have given our family. I will try to post pictures soon. We have been taking lots of them during this process.

Monday, August 9, 2010

Week 2

Week 2
Week 2 was a crazy week. Kylee's counts all started to drop as well as something called her ANS. If her ANS drops below 500-700 we have to be very careful of infection. Hers was 1036 on Monday but by Thursday it had dropped to 350. They decided to have me give her shots to increase her WBC and as of today that is helping. It was up to 600 range today. Her hemoglobin is also down so we had to be very careful that she wouldn't hurt herself or scratch herself as she could bleed very easily. It got so low that they decided to give her a blood transfusion so on Friday she went inpatient until Sunday. Last of all she became dehydrated and so mom got to learn how to give IV's. She ended up gaining 2.2 pounds overnight from the IV so we had to stop them. So overall a very crazy week. Happy it is over and hopefully week 3 goes better. I also got a call from my mom today that Kylee has started to loose her hair. So I am off to Hobby Lobby tonight to get some cute hats, scarves and wraps for her head. She also got a very pretty sash from our friend's the Lundt's that says very important princess. So that has been the overview of week 2 and we are now starting week 3. If we can get past Wednesday things should get a little better as the radiation will be reduced from head and spine to just head.
Thank you for all the prayers and support.