I have been a wreck. Waiting for mouth sores to appear and any other side effects of the high dose chemo she received. I am really trying to just enjoy these moments but I just can't. She is so up and down and will change in literally a second. The emotional outbursts are almost more than I can handle. It is SO hard to know where to draw the line as far as discipline. I know she doesn't feel well but I think she is beginning to use the "chemo" as an excuse only because she hears me do it. She is not very social/friendly with people she doesn't know. I pipe in and explain that she just had chemo and is not feeling well... therefor Taleah used that as her excuse for bad behavior toward Scott last night. It broke my heart that she even had the option for that as an excuse. However, I don't want her to associate bad behavior with chemo. We tried to do semi-normal things this weekend and we shouldn't have. She was emotional, crying and not a lot of fun to be around. I just want to be able to enjoy this great weather and be normal.
We did make it to the park and she was actually happy 80% of the time.
After our attempt of doing normal things... she didn't feel well. She cried and cried.. I made her 3 different dinners and nothing was satisfying enough. Luckily, Scott saved the day with the idea of a bubble bath. A serious bubble bath. She was all about posing for the camera. She loved it!
We were able to have a girls date while daddy was at priesthood and Slade was with Grandma Stevenson. We went to Julie's salon while Tavia had her hair done for junior prom (she wore my grandma's prom dress from 1961). Taleah was in heaven doing girly things. I think she enjoyed the one on one time with NO distractions.
After our attempt of doing normal things... she didn't feel well. She cried and cried.. I made her 3 different dinners and nothing was satisfying enough. Luckily, Scott saved the day with the idea of a bubble bath. A serious bubble bath. She was all about posing for the camera. She loved it!
We were able to have a girls date while daddy was at priesthood and Slade was with Grandma Stevenson. We went to Julie's salon while Tavia had her hair done for junior prom (she wore my grandma's prom dress from 1961). Taleah was in heaven doing girly things. I think she enjoyed the one on one time with NO distractions.
We are trying to be normal as we are approaching "maintenance". I took them to the grocery store and boy was it an adventure. Of course I brought my own Clorox wipes to clean the entire cart. Yes, I received some "looks" but it's all good. Not sure if I will ever get over wiping things down. It is now a habit.
I must say that conference was amazing. I think a lot of those talks were just what I needed. It seemed like there were a lot of talks on sick kids, trials and the plan of happiness. There was one talk on Sunday morning that made me cry. It was very emotional for me and made me think of our lives and the many other cancer cuties' families. A real perspective of why these sweet kids suffer and why some of them return to our Heavenly Father sooner than we would like. Touched my heart and it was a talk that I will never forget.
Maintenance if the last phase in Taleah's treatment. It will begin April 16th (if she makes counts) and last until October 31, 2013. Taleah has been on a study since the beginning. They took a little extra blood and bone marrow sample for the study. The treatment plan is not different from the "regular" until maintenance. Then, it is an option of 4 different arms. The child is randomized to an arm and then the parent has the option to stay or withdraw from the study and continue with the standard plan (which is 1 of the 4 arms). One arm is less chemo, one is standard treatment, and the other two arms are additional chemo. I can see pros and cons for both. I know people that have children on all arms. It is extremely frightening to wait and find out what she is randomized to and then decide if it is something we think is right for her. There will be a lot of prayer and fasting for that decision.
We will pray that the next 2 weeks go smoothly (we have no scheduled appts). Hoping for no major side effects and a happy break. She may end up needing a platelet transfusion because they were so low before she had this last dose. Time will tell. Until then, we will try to live it up!
Lot's of prayers your way. Hang in there!
ReplyDeleteTaleah is so strong and adorable and she is so blessed with such an awesome family. Keep on fighting with that beautiful smile on your faces and whenever it's not possible to smile, you will have each other's shoulder to cry on and we'll keep sending prayers and thoughts your way.
ReplyDeleteYou guys are doing great!!! Hang in there :) Taleah is constantly in our prayers and we send our love to you.
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