Here We Go No, No One Gonna Stop No Go! (Janes Addiction) We are back at 7 South and ready for our next round of chemo! We arrived at clinic today at 9AM, checked in and got accessed. Then I pushed Jackson in his wheelchair two blocks down the road to the Rehabilitation Out Patient building to have an audiology appointment. At this appointment Jackson would undergo about 45 minutes of sound and hearing tests. During this assessment the audiologist gives Jackson headphones and feeds him sounds at various decibels. We did a baseline audiology test on September 11th (pre chemo) and now we are checking to see what type of damage, if any, is happening in regards to Cisplatin. After the test the audiologist knew we were headed back to see Dr. Reed so she wanted to give me her report so we could go over the results. Jackson has hd some hearing loss based on his baseline data. In September he could hear very high pitch sounds and tones and now he is not able to recognize those sounds. However, the level at which we hear music, speaking tones, etc are still very good. He is still i a safe range and the loss is minimal. Therefore, there will be no changes made to the amount of Cisplatin he receives. After our Audiology test I pushed Jackson back to Clinic and we had our appointment with Dr. Reed. I wasnt sure if we would get a necrosis report today so, I was eager for our time with him. When he came in we spent the first 15 minutes asking him about his Thanksgiving vacation (which was a family cruise,) He went on the largest cruse ship called The Oasis of the Sea - and said it was awesome! He pulled up pictures on the computer and was sharing it with Jackson and I. They even have a scale on the website comparing it to the Titanic (needless to say there is very little comparison because this thing is a GIANT!) Guess who wants to go on a cruise now? (that would be Jackson - I would totally go on a cruise if it was the Weezer cruise and I was surrounded by live music.) We then proceeded to discuss music and he was asking Jackson about his favorite band. Jackson told him that his favorite was Jack White and the White Stripes. Dr. Reed was impressed and said he liked the White Stripes too. He was telling Jackson about one the first videos the White Stripes ever put out and then he pulled it up on the computer. We watched the video and had another 15 minute music conversation. Finally we got down to business - and he looked at Jacksons surgery site, listened to him and said there was no necrosis report yet but that as soon as he got it from the pathologist he would call us. After seeing Dr. Reed at 12:45 they said there were no free beds on 7 South available. They suggested we take off, go out to lunch somewhere and wait until they called us to come in. We went and got a cuban sandwich and nachos from a dive restaurant on 9th Ave. N and 23rd called Simply Delicious and headed to my dads office to sit and eat our lunch. We ate, visited with various friends and retreated to Pops office to practice some putting. Finally at around 3:30 PM we heard from All Childrens that our room should be ready around 4:15 PM. We got back to ACH and the Childrens Miracle Network Radiothon was continuing from the Auditorium. The Radiothon started on Dec. 4th and continued through today. We were fortunate enough to connect with my friend Denise Kauble (whos is our PTA VP at Belcher and a friend) who was donating her time today, on behalf of Marriott, to the Radiothon. Recently Denise and her Marriott Team put together a basket for our family that had Tampa Bay Rays dolls, Baseball Bats, Puzzle magazine, free two night stay at a Tampa Marriott as well as a year family pass to the Lowry Park Zoo. Jackson and I were able to give Denise a squeeze as well as meet these special team members that surprised us with the gift basket. They were excited to meet Jackson and Jackson was eager to thank them for there special gifts. If we had been admitted this morning - we would not have been able to make this connection. Total Win Win. Jackson is still hydrating and getting ready to start his Doxorubicin and Cisplatin. Doxorubicin runs for 48 hours and Cisplatin runs for 4 hours. These are pretty harsh chemos but we are already starting our nausea cocktail of medicines (which include Zofran, Marinol) then they have some others we will add in a few hours (Decahedron and Amend.) He is pretty anxious about the nausea that he know is coming - I sure hope that it isnt as bad this time!! I will be sure to keep you all posted! XO Caroline (come on 97% necrosis!!)
Posted on: Sat, 06 Dec 2014 03:21:14 +0000
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