Here is an update from Jen, Lexi's mom, on how Lexi is doing:
Thursday, April 22, 2010 9:52 PM, EDT
Hello Everyone! Today is what Alexis's doctors call her 76th day post stem cell transplant. It has actually been a little over two months since Alexis has spent the night in the hospital and we have thoroughly enjoyed our time at home! We have however, spent many days traveling to and from the hospital for appointments, scans and radiation during this time..
Next week will be the nine month mark since we began this journey. I can't believe it! Even though Alexis has continued to be very strong, I think the past two months at home has slowed down the adrenalin rush for all us. Lately, Alexis has almost daily made comments like "Why do I have to have cnancer or I wish I never had this cancer". Scot and I just remind her that we wish she didn't have it either but that she does and we will get through it together!
Two weeks ago today, Alexis finished her last round of radiation. Her body reacted really well to the treatments. She had very little nausea ( with the help of a nausea med, Zofran) and a high energy level. Her appetite wasn't very good but she did eat some. After the treatments, it took a little over a week for the nausea to subside completley and she did start to be more tired after the treatments. The good news is that she never required any transfusions or more stem cells. Right after radiation, Alexis told her nurse practitioner, Micah that she never felt hungry and that food did not taste good to her. Micah gave us a prescription for a med that increases appetites and now two weeks later Alexis is eating triple of what she was eating! We couldn't be happier. Her weight is down to 37 lbs so we have decided to keep giving her the med for at least another week!
Right after radiation ended, no time was wasted before the BMT team started scheduling Alexis for another long round of scans and procedures to test every area of her body. The scans showed that the cancer activity has decreased but unfortunanly, it is still present. In January, Alexis had 5 areas of cancer activity in her bones. Currently, she only has 3 areas!! Dr. Soni told us that since it hasn't been long since radiation, the radiation could still be working to kill the rest of the cancer cells. If the scans were taken again in two weeks we could pitentially see more improvement. The hearing test has shown another slight increse in hearing. We haven't noticed a difference yet but she could have trouble in large groups. Yesterday, I took Alexis to her bone marrow aspiration and CT scan. The bone marrow was a much different experience than before. In the BMT department, they do not go through the operating room, instead they put the patients into a twilight sleep and I was actually able to be in the room to watch the entire procedure! The nurses and PCA were a little worried about me because I had not ate anything. They thought for sure I would be queasy! But actually, I did very well. I couldn't really see much. All I could see was the drapes covering her body and the tools they used sticking out of the drapes. It was a little disturbing on what they actually do the more I think about it, but I will leave that part out for those of you with a weak stomach! When Alexis was being put to sleep, Child Life came in and played with Alexis to distract her. It was wonderful. Then, after Alexis was asleep they talked to me and expalined exactly what the nurse practitioner was doing. After nine months, it still amazes me how supportive the hospital can be for their families. We are truly lucky to live so close to a hospital that strives for the best possible care for our children! When Alexis woke up about 20 minutes after the procedure, she was in pain. It was the first time with all of her treaments that I have seen her cry and repeatedly state ow it hurts it hurts. The nurse brought her some morphine very quickly and the pain did go away.
So what is next... well, when we were at the hospital yesterday, I was told that our first appointment to be switched back to oncology was moved from Monday to Friday(tomorrow). I didn't really think to much about it until later in the day when I saw Alexis's oncologist in the hall. Dr. Ranalli started telling me that on Friday he was going to start having Alexis take this injection called GMCF (it is a med like the neupegen shot I use to give her after chemo to increase her counts except that there are more side effects to this med). He stated that I would give her this on Friday, Saturday and Sunday and then she would be admitted on Monday for 4-5 days to start the antibody infusion. I was shocked! I wasn't expecting for the next phase to start so quickly. When I said to him "so soon" he just stated, Monday will be day 80 we need to have this started by day 100! I was hoping to be a little closer to day 100 but I guess we need to just go with it! I can't lie though, I was very disappointed. Alexis was just starting to eat more normally and Scot and I both wished we had more warning. Maybe, it is just that we are dreading what is about to happen, who knows! We have been told that when Alexis receives the antibody infusion that she will be accutely ill. We have been told to expect extreme bone pain, tremors, and more. The side effects are suppose to end as soon as the infusion is over, but the bad thing is that she will need the infusion for 10 hours a day for 4 days in a row. We have been assured that they will be very creative to try and diminish the pain as much as possible. Scot and I have decided that we both need to be with Alexis the first day. After that I am going to stay with her the rest of the week. We don't know how Alexis's body will react but we are expecting the worse. Alexis tends to need a lot of pain medicine to control the pain so hopefully this does not follow suit!
Alexis continues to work with Mrs. Tucker about 6-8 hours per week. She continues to make great strides with her school work and has started to bounce back to her normal energy level.
Ever since Easter, we have been trying to keep Alexis very busy! Since Alexis must still wear a mask everywhere she goes, our choices are limited but this has not stopped us. We have taken short trips to the grocery, Kohls, and the drive thru, visited the park and have gone to Grandma and Grandpa Howard's (who have cleaned there house thoroughly so Alexis can visit!). We have also had many visitors. We have been able to see my brothers family, both of Scot's brother's families, my friend Dale's family who lives in Huron and my friend Stacie who lives in Dayton. We went so long without having a lot of visitors so we have enjoyed seeing everyone!
Well, I think I wrote enough for one day. I need to go to bed I have to be to work early. I hope to write more next week.
Take Care,
Jen
If you would like to catch up on Lexi's story, you can read all about her here. Please keep her in your thoughts and prayers.
Tinker Bell...she was part Collie, part German Sheperd, she was given to us by a lady who lived in an apartment, we had a large yard. I was 10 years old when she arrived and 21 when she died. She was the best dog ever.....
Donna
dwarrington1@gmail.com