We had our first clinic appointment in a month and it could have gone better. Kennedy was very upset about getting her port accessed but did settle down quickly. Her ammonia levels were very near normal which was a good sign. If that continues perhaps we can lower her dose of Lactulose. Her counts were falling too. Dr. Norwood thinks that it has been caused by a build up of 6MP and Methotrexate in her system. It may be that she does not have all of the enzymes necessary (in part because of the damage to her liver) to process them and we may need to make adjustments to her dose. For those who love numbers (and other families who understand them), her wbc was down to 1.3 (normal range is 4.5-13), her hemoglobin was 9.3 (nr is 11-14), hematocrit was 29.1 (nr is 34.7-46), platelets were only 49 (nr is 140-440) and her ANC was only 660 (nr is 1500-8500). Needless to say, we are returning to the clinic in a week to recheck her counts. The doctors checked protocol (from what I understand, Kennedy is the only kid in the clinic in LTM on AALL0232) and are holding her 6MP and Methotrexate until next week but we continued with the Vincristine and steroids. Kennedy was thrilled! With 6MP you can’t give anything to eat 2 hours before and 1 hour after and she HATES it! Now she can eat all the way up until bedtime. 🙂 She is one happy camper. So, that went fine. She is holding steady on her weight despite eating everything and they think it has a lot to do with the fact that she is very active and burning more calories. We’re still working out the details for pt and ot but hopefully she will be starting that soon. Hmmm…as far as treatment, I think that about covers it.
Oh, speaking of treatment, Kennedy pretty much remembers (or at least she mostly talks about) the things she liked about treatment. Leave it up to a 5 year old to find a whole list of things she enjoyed/enjoys about cancer and it’s treatment! She told me the other day that her favorite was radiation! She actually said that she loved it and wished she could still go! Ever heard anyone say that? She was very fortunate to only have 8 days of treatment and remembers absolutely no pain. She loved the staff over there and was thrilled when we were done every morning because we would go to Auntie Caryn’s house. She mentions how much she liked Diane and Melissa from Child Life, hospital bingo, late night trips to the Heartbeat Cafe-usually for cucumbers or bacon, all her most favorite nurses, Karaoke night, the fish tank, the wagons, the playroom, baking cupcakes and cookies, playing with her friends who were also inpatient, tubbies in the cool tub room, all the movies, pushing the call button over and over and over, ice water, decorating her windows with Auntie, having visitors, the Music Rx cart, pt and ot, etc. The list could just go on and on and on. I’m not sure if she does not focus on the bad things or if they are just suppressed and will resurface at a later date. It’s so hard to tell at this age what is really going on with them. Well, I’m happy for now that she is looking for the positive.
Well, I just have to update about Austin, for those that haven’t heard yet! Things went fantastic for him this past weekend! His rodeo was in Clark County at the Saddle Club and boy was it HOT! Austin qualified on both of his rides and was currently in 2nd place for both PeeWee Bullriding and PeeWee Bareback as of Saturday. (He will actually get paid!) That is awesome (especially since this was his 3rd rodeo ever!) He scored a 59 in bareback and a 61 in bullriding. And to think…he was so nervous he didn’t decide he would ride for sure until the last minute. I think there is just too much time to think about it! He would be nodding his head yes and saying no but they would sit him on his roughstock and he would nod for them to open the gates. Both times after his ride he was just beaming! He received LOTS of encouragement from the senior riders and that sure boosts his confidence. We were so excited that Aunt Lori, Doug and the kids came just in time to see his bareback ride and Papa Mike, Aunt Linda, Ellissa and Tyler were able to join us for the day. His next challenge? To take up breakaway and team roping and goat tying. After all this…not a problem! If you havent’ seen the pictures but would like to, just feel free to e-mail me and I promise to respond in a timely manner. They turned out fantastic!
So, in conclusion, things are cruising along with some minor bumps in the road but we keep our eyes on Him and keep moving right along. Today? I am very content.
Success seems to be largely a matter of hanging on after others have let go. ~William Feather
All of us have had the experience of a sudden joy that came when nothing in the world had forewarned us of its coming – a joy so thrilling that if it was born of misery, we remembered even the misery with tenderness. ~Antoine de Saint-Exupéry, Wind, Sand and Stars, 1939, translated from French by Lewis Galantière
Hope-Faith-Courage-Love,
Mel
