Tuesday, July 1, 2014
This month to draw Austin's labs I took him to the Peds floor so Michael and Jason could show him that a PIV wasn't so scary. Michael distracted Austin with the iPad while Jason drew the blood. It worked very well despite Austin's lack of enthusiasm. From now on we will just go to the lab to have Austin's CBC drawn. We will miss Michael and Jason but I won't miss the all day marathon doctors appointments every month.
Monday, June 23, 2014
I noticed back before Austin was diagnosed that always walks on his toes. So I decided to take him to a Physical Therapist to see what can be done. I'm worried that surgery will be the ultimate answer but first I want to try everything else. The therapist measured Austin's stretch in his feet and legs and gave him some exercises to try. Austin just likes the ball pit.
Monday, June 9, 2014
Our second trip for the week was to take Austin and Madison to Camp Hobe. They have been looking forward to going back after having so much fun last year. It's a very fun, busy week and they love it. I missed them like crazy but it was much easier to drop them off this year.
Thursday, June 5, 2014
June's clinic visit was the first of three trips to Salt Lake in one week. Austin and I made this trip by ourselves. This time they couldn't get Austin's port to work at all so a peripheral IV was placed in his hand. Austin hated it but we didn't have much of a choice. We have finally had enough of the dumb port so the plan will be to remove it in August during his next visit. Between now and then I get the chore of convincing Austin that periphreal IV's are not all that bad. Yeah right, wish me luck.
Saturday, May 31, 2014
Friday, May 9, 2014
This month's checkup came and went without event. Austin feels good and hasn't been sick. I want to talk a little about the exhaustion that has set in. This marathon of a treatment plan is 3 1/2 years long. We are a few months to the 2 year mark. There are some days that I think it will never end. Austin is so tired of the frequent doctor's visits, the pills he takes every night, the painful pokes, the nausea and vomiting and general crappy feelings that come with chemo. As his parents, we are so tired of seeing him suffer, of being the "bad guys" that make him go through it all. I feel so guilty every time I drive him to his appointments to get tortured. I know it's not my fault but I feel so responsible and I somehow feel like a failure that I can't take it all away and make it better. The constant worrying and sleepless nights take a heavy toll on me. I sometimes lose sight of the big picture, I forget to count our blessings and appreciate how good Austin is doing. Sometimes, an extended pity party sounds great. Austin rarely complains. He takes his pills every night without a blink. He usually lets out a long sigh when I tell him we have to go to the doctors again but he doesn't whine. He is so brave and manages to keep his sense of humor intact through it all. But sometimes, every now and then, I see this look on his face and I know he feels the exhaustion too.
Friday, April 11, 2014
It was only a month since the last visit and poke but we made the trip to Primary's again. Once again the port wouldn't work without TPA. We are really getting tired of it because it adds hours of waiting around for the TPA to work so they can draw blood. Finally they were successful so we headed to the RTU for Austin's lumbar puncture. Because the last time was so difficult they wanted to have Austin go back to the RTU where they can use heavier sedation. Austin was not at all happy about this because he hates waking up in the recovery room. Mom and Dad hate it because it takes so much longer and makes Austin more sick. The LP was successful so we headed out. We went to lunch and Austin seemed to feel fine and eat without a problem but as soon as he finished he had to run to the bathroom to throw up. He came back and said, "ok I'm ready for desert!" I told him he acts like a pregnant woman. He was not amused.
Saturday, March 29, 2014
Austin's chemo dose was increased last month so as a result his hair has been falling out again. He won't be totally bald like before but he has some bald spots. I really resisted shaving the rest off until Austin started complaining about being itchy from the hair all over him. So I gave in and shaved the rest off. It makes me so sad to see him bald again because it's a constant reminder of the battle that he is fighting. Fortunately, Austin always finds the silver lining and his response to my sadness was: "Well look how easy it is to comb my hair now!" You win Buddy, you win.
Friday, March 14, 2014
Our March trip to Primary's didn't go as we hoped. Once again we had to use TPA to get his port to draw back blood. So frustrating. When it came time for Austin's lumbar puncture they were unable to get the needle in the right place. They poked his back 4 times without success. It may be because he has gained some weight, because they couldn't position him right, or it may have just been bad luck. Whatever the case, we have to come back back again in a month. I was beyond frustrated with the whole trip. Poor Austin was so bruised and then not happy about another poke so soon. He is resilient though and I think his bruises on his back with heal faster than the ones on my heart. His smile continues through the pain, ever the warrior that he is.