My name is Alex. I am 6 years old.I was diagnosed acute lymphoblastic leukemia in February 08. I completed my journey on June 16, 2010! No more medicine!
Alex became sick with earaches and cold symptoms around or before Thanksgiving. I had her to the doctor several times, and she was always diagnosed with a virus or ear infections and we were sent home.
Around the week of February 20,08 we noticed she was sleeping more her color was off, she was miserable and wanted to be held alot. On Friday Feb 22,08. I decided Alex was sick enough to go in an ambulance to the nearest hospital which is Little Falls. After 15 minutes in the er the doctor came in and said, her blood counts are so low that it looks like Leukemia to him but this is not something they were equiped to handle and we were sent to Albany med by ambulance After being in Albany med Er they gave her a blood transfusion and started running tests. We were already set up with a Pediatric Oncologist by this time. That's where our journey has began. Her doctor diagnosed her with ALL Leukemia, with standard risk. She had surgery yesterday and had a port put into her chest so that the nurses could stop pricking her with needles. She will also recieve her chemo therapy treatments through this port. So far so good!! The first part of our Journey has began. I will keep all of you updated on her long road We are at the end of our first road map! We did it!The worst part of the induction was Alex's reaction from the steroids and her not being able to walk Over the second part of our journey which was delayed intensification. I think the worst part of this was there seemed to be so many spinal taps and Alex did not like them at all. Having her accessed for 4 days was also rough. She learned very quick that she does not like tape on her chest and it hurts coming off. Towards the end of this phase it seemed we had counts checked alot, Alex's ANC started dropping fast her lowest was 200. She is doing good now and counts are on there way up. On Monday June 16 we start Augument Interim Maintance, she will have 2 appointments in a row then I think it will be every 9 days we go to clinic. I will update when we get through this part.Well here is an update about this phase,took 2 weeks to get started due to low counts. Then once we got started Alex got this weird virus and a fever and ended up in patient for 4 days,Now we are back on track and her moods are horrendous. Keep praying. Alex's moods were because of her blood sugars which we have under control now.We have completed this phase. We start the last delayed intensification on Aug 18,08.It has been a little rough even with the steroids being spaced apart, we are about halfway through this phase and almost to long term maintance! another small bump, Alex had reaction to a spinal tap some nerve irritation and an arac fever, 2 days inpatient came home on neurontin and motrin because of her counts being good, she is feeling great, 4 more days of arac and a couple more weeks I do hope we head into long term maintance! Oct 27,08 Long Term Maintance started! Jan 7,09 Alex is doing pretty well a few bumps and some delays, nothing we haven't been able to get through!
June 16, 2010 Alex took her last pill! The roughest part of our journey was the steroids. The best advice play is the best medicine of all. We treated Alex like a normal kid for the most part. Sure we doated on her a little, but we kept her life normal and consistent. I will update more when I know how life is going to be. Adjustment to a new lifestyle is now our next journey!
Today I got to tour Ronald McDonald House and some of Albany Med's pediatric hospital got to hear about the job of a child life specialist. I am in my second year of nursing school now thinking back to 2008 when Alex was diagnosed with Leukemia we were living in the world we toured today and knew first hand how important play was to Alex's recovery. Bittersweet as the memories come back and the visions of Alex battling her cancer and us as a family learning to live in a new unfamiliar world. Our health care team was awesome and still is. I am truly thankful for them and all they did for Alex! She is now in third grade and doing well her appointments are now down to once a year. Alex is also thankful for her health she lives life to the fullest and helps us realize to enjoy life and play when you can. We haven't updated in a long time and after today I felt the need for an update. God has blessed us in so many ways.