Journal entry by Kristin Lane

Today has officially begun the count up portion of the Stem Cell admission.  The first seven days start with a count from -7 to 0.  Day zero is your transplant day when Weston will receive his own stem cells then we count up during the recovery days following. They say that kids usually average going home on day 21-ish so we are hoping for that! This morning, Weston woke up to the bad news that he was confined to his room for the next 72 hours as a precaution to limit exposure from other patients.  This made today very loooong.  I was scrambling to come up with activities to keep him occupied in a very small, boring space, but he really made the best of it! He was super playful and happy all day! We are hopeful that we will be switched to a larger room for the longer-stay patients in the next day or so.  
After some bloodwork and testing, Weston received his first dose of chemo called Thiotepa.  This particular version of chemo comes with a lot of maintenance; Thiotepa secretes out of the skin through the pores and can cause burns on the skin.  Because of this, Weston needs to be showered every six hours: 12am, 6am, 12pm and 6pm.  Since we are rinsing him so frequently, he cannot wear a dressing to protect his central lline site...it is now being protected with gauze and a mesh tank top the nurses doctored up.  Exposing his central line and getting it wet goes against the Cardinal rules followed by Cancer parents! It is incredibly nerve wracking and we have to be very careful about keeping him clean. We also have to be weary of our exposure and if we are holding him for a long period of time, it is recommended that we also shower and change our clothes.  This will go on for the next 4 days—12 more showers to go!! I’m not looking forward to the 12am wake ups, but the process only takes about 10 minutes then we are back in bed! Given how powerful this chemo is, we are expecting that he will start to feel crummy in the next day or so.  I am making sure that he eats around the clock to pack on as many pounds as we can before the loss of appetite sets in! Overall, today went relatively smooth and hoping it stays that way! He’s such a champ and his smile was keeping me positive!
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