So….my goal through all this is to attempt to write weekly and give you updates about Jax. this past weekend we has a stellar corn hole tournament (thanks to my brother and SIL and a host of others including Jessica&Allen). We were able to hangout with family and friends and raise money for Jax…it was amazing and Jax had a blast! He was quite tuckered out the following day and then monday he had a rough day and almost ended up in the ER for sedation meds. Being the strong trooper that he is, he pulled through and we discover that he has strep throat. His treatment tuesday was difficult to witness…he was exhausted and ended up losing his mind which as I have said through all of this is difficult to be pat off…the little guy scratched and bit and screamed while his wonderful and patient nurse tried to put his butterfly in his doughnut / accessing his port. I eventually has to walk him outside the hospital, barefoot the both of us w/ Jax writhing in my arms and he bit my face…poor buddy…when he pulled back and saw blood which happened to be his own from bitting his lip he said oooohh…Im so sorry mommy. and then the switch flipped again. thankfully, my strong little man was able to calm down and get his chemo without being admitted…I will take the small blessings! He is back on steroids this week and holding steady with only mild meltdowns (thankfully no full on psychosis!…YAY!). He has been restless, somewhat sad and quiet, misses his school friends but what school aged doesnt toward the end of summer! I have truly cherished this time with him…the bad the good and the funny…b/c with Jax there is always funny! We had and amazing Poker Run today thanks to Misty and Bill/ Sean and Antoinette…as well as all the people who participate and donated! Great Music from Untaxed Whiskey and thanks to Our Place on Orange Avenue for hosting such and amazing event! Finally, we had multiple raffles from the above event and the Beamer Ball singed by Frank Beamer was won by my brother (who of note is a UNC fan but bought 60 tickets!). We texted to tell him that he won and no more than an you later he called and said that his friend Allen, who had helped w/ the Cornhole tournie, had friend who just wrote saying that had a Fish Fry in Jax name and raised 4200 dollars….ARE YOU KIDDING ME! I was shocked and brought to tears!!! I have said it before…I am speachless and overwhelmed by the support/love/sympathy/empathy that the human race/society has shown for my son, family and me during this difficult time! I want to climb on the rooftops and shout….People are wonderful!!! I feel truly blessed to be able to look through this magical peep hole and have a glimpse at humanity ( not what the news or youtube or Facebook would have you believe) and now that people are zoo giving and loving! Even to strangers…its truly wonderful! Thanks for all your love and support and prayers. Please pray that Jackson starts to feel stronger and that we have a good veal with PT/OT and our wonderful psychologist to help Jackson cope. Have a great week and will write soon
Posted on: Sun, 03 Aug 2014 02:53:44 +0000
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